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04-08-2012, 09:59 PM   #31
Crohn's Mom
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Well it's the end of day 3 and things are going well
JJ is conforming to the new "diet" quiet well; Can't say that we've really noticed any "difference", however there are no complaints. By that I mean, he hasn't complained of a "stomach ache" in 2 days! Is this my imagination ? I hope not!
I have no idea if this is just a coincidence or not, but what I do know is that it has been a VERY long time since JJ has gone 2 whole days without saying "My stomach hurts" or "I have a headache", and now we have 2 days....TWO WHOLE DAYS ! LOL . This may sound silly to most, and that's ok
We will continue down this gluten free road as scheduled, for 3 weeks minimum and see how it goes.
Btw...We had our completely Gluten Free Chicken Parmesan for dinner tonight, along with GF garlic toast and it was amazing ! We were all very pleasantly surprised at how much we liked it,and honestly didn't taste "too" much of a difference.

Thanks for all the advice so far..and please...keep it coming !
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~T~
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
04-08-2012, 11:59 PM   #32
happy
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Great! Hope the headache and stomach ache continue to stay away.
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Diagnosed with IBD Sept. 2010
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Maintaining remission on Full Elimination Diet
04-09-2012, 03:27 AM   #33
DustyKat
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WOW! Sounds promising T! I surely hope it continues.

Has GF made any difference to your symptoms T?

Dusty. xxx
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04-09-2012, 03:35 AM   #34
Sascot
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Hope it lasts longer than the 2 days!! Fingers crossed.
04-09-2012, 05:43 AM   #35
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Awesome T!! I'm with Dusty…it'd be awesome if you both experienced something of a turnaraound!
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PSC 3/10

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04-09-2012, 08:02 AM   #36
dannysmom
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Good news about JJ - hope it continues. I'm also w/ Dusty & Mark, How are you feeling Tracy? How is your weight?
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(Danny's story)
04-09-2012, 08:13 AM   #37
Tesscorm
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Glad its going well and you're beginning to see results! Hope it continues!!!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
04-09-2012, 04:24 PM   #38
GFinDC
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Hi Crohn's mom,

You might find some ideas for GF meals in this thread:

Gluten free meal planning
http://www.crohnsforum.com/showthread.php?t=34528
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Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Celiac disease, (not Crohn's), thyroid cyst and nodules, Lactose / casein intolerant. My current bad list is: gluten (wheat, barley rye and oats), dairy, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, nightshades (tomatoes, peppers, potatoes), alcohol, and hard work. have a good day! :-) Paul
04-09-2012, 07:41 PM   #39
izzi'smom
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So glad to hear that it is going well!!!
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Angie, mom to Izzi,10 Crohn's Colitis 1/11 prednisone, entyvio since 2015 Tried: Tacrolimus, Bactrim, simponi, Levsin, Prevacid, Prednisilone, Humira, Remicade, EN via ng, vancomycin, Pentasa, carafate, Sulfasalazine, Cortifoam enemas, dietary changes, fish oil, VSL#3.
04-09-2012, 07:52 PM   #40
mstout928
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Keep up the good work with the diet. I'm sure you'll be happy with the results.

Our family eliminated gluten after my daughter's diagnosis in January. To say she is doing good would be an understatement.....she is doing great and with no drugs! It's been a good thing for everyone in the family, too. We are eating much better and feeling better. My husband commented last week that he couldn't believe how much better he felt since going gluten-free.

Meal planning has been the biggest challenge, so it was very helpful to find this website called The Fresh 20. Each week, they post a grocery list of 20 fresh ingredients with recipes for 5 nights. Groupon has a coupon for half-off this service, so you might want to check it out:

http://www.groupon.com/deals/the-fresh-20-san-diego

Another great resource is www.livingwithout.com

Good luck to you!
04-10-2012, 07:36 PM   #41
Crohn's Mom
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Thanks again for the well wishes and encouragement everyone

JJ still seems to be doing so well ! Not even a hint of a stomach ache complaint or headache. He's also slowly beginning to not complain as much about being so tired all the time. I'm almost allowing myself to become hopeful !!

As for me, unfortunately, no ~ there's been no sign of "help" for me.
I thought the first couple of days might be helping because things in the bm department seemed to be slowing down. However, now the last 2 days I seem to be going downhill a bit. My weight has finally stabilized for the last month or so thankfully ~ I am hoping with that at least stays that way. I am a bit worried because I start a new job tomorrow and I haven't worked in nearly 7 months; so the activity may cause me to begin to lose again. I may have to sneak some bread and pasta while I am away from JJ just to keep some extra calories in me ! LOL. My husband was very concerned with me doing this with JJ from the start because his words were " You can't afford to cut out any more foods from your diet !" I told him it would be "fine", but I'm beginning to suspect that he may be right.
JJ will understand If I have to stop tho I am sure ~ he's such a sweet kid and I know he doesn't want me to get sicker
04-11-2012, 05:38 AM   #42
Dexky
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Hope the job goes well T! What are you going to be doing??

Great news on JJ!!
04-11-2012, 09:01 AM   #43
System-X
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Here is a list of foods with their inflammation ratings:

http://nutritiondata.self.com/foods-...000000000.html
04-11-2012, 02:13 PM   #44
DustyKat
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So fab to hear that things continue to go well for JJ! YAY!

Sorry to hear things are no better for you though T. Have you ever thought about giving psyllium a try T?

Thinking about ya mate,
Dusty. xxxxxxxx
04-11-2012, 05:48 PM   #45
Crohn's Mom
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This might sound silly, but I think I am having actual withdrawal symptoms from no Gluten! I have a terrible splitting headache, and just feel blah and very shaky today ~ It's awful; but I really do think it's the NO Gluten. I have always eaten a ton of bread, pasta, etc as it was always "safe" for me ~ meaning no pain usually after eating.
I'm wondering if this could also be why my bowels seem to be going crazy the last few days....is it my body actually releasing "toxins" and its a "good"? thing ?
Are my theories crazy, or should i just go order a large pizza and sub and get it over with? LOL
04-11-2012, 05:55 PM   #46
Catherine
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From what I understand withdrawal symptoms do occur for some people when removing gluten from their diet. How long have you been on the diet now?
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
04-11-2012, 05:56 PM   #47
Crohn's Mom
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Today is day 6 ~started having "symptoms" about 2 days ago
04-11-2012, 07:53 PM   #48
imaboveitall
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Hon, you may need more than the gluten free can give you! What you're describing sounds like hypoglycemic reaction to me.
East some complex carbs with fatty protein and see if it resolves. Please.
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VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
04-12-2012, 08:49 PM   #49
Mayflower537
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Hi, T, How are you doing today? Any better? How is your son? Still improving?
04-17-2012, 12:28 AM   #50
Crohn's Mom
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Hon, you may need more than the gluten free can give you! What you're describing sounds like hypoglycemic reaction to me.
You were absolutely correct ! Even though I didn't see this until today, you were spot on!
I checked my blood sugar after dinner that evening ( my father in law in diabetic ~ he had the necessary equipment for me) after posting and it was only 65 ! After eating ! Not good at all !
So I tried to get by with drinking orange juice and eating a few lil candy sweets ~ then the next day I felt even worse and was honestly considering taking myself to the ER. I finally said forget it and ate some pasta ~ Lobster Mac N Cheese to be exact ! LOL ~ and presto! I felt a little better within minutes. for the next 2 days I just couldn't stop eating ! Small meals, but a lot of them ~ slowly by the end of that next day I felt "normal".
Honestly, it was quite scary for a bit
I am so much better now tho
and I won't be trying "gluten free" again, or any other "diet" that doesn't include carbohydrates

I felt a ton of guilt because I really wanted to try this with JJ so that he's not alone in it ~ Im grateful that my husband is continuing to stick with it tho and doesn't seem to mind

JJ continues to do well and I think it's actually, really, helping him.
He was quite disappointed that I had to stop, but I think he understands how literally sick it was making me and he's ok with it now
(hopefully ! LOL)
04-17-2012, 06:46 AM   #51
imaboveitall
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A fatty protein/complex carb combo works better than actual glucose to correct hypoglycemia. Ex a hamburger on whole grain bun. Sugar only corrects it for a short while and you soon feel bad again.
Glad I was of some help!
04-20-2012, 11:10 PM   #52
Mehita
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My son was dx with Crohn's and Celiac at the same time, so he went gluten free just hours after his first endoscopy and colonoscopy. We've found that the GF diet is pretty low fiber/low residue in and of itself, which can help with Crohn's symptoms. His first gastroenterologist even said that the GF diet alone was keeping the Crohn's at bay for the first two years after diagnosis and it wasn't until recently that he was put on meds for the Crohn's. I hope you find some relief and success going gluten free!

You can find most anything in a gluten free version these days. If there is something that you find you're using a lot of, check to see if Amazon offers it in bulk. If you sign up for their Subscribe & Save program you get a further discount and can set it up to automatically ship to you every x months. There are some items that we save up to $2 on by doing this compared to buying it in a grocery store. Also check out www.glutenfreely.com. I have to admit, I do buy some things processed... my son has a bulk box of GF cookies at school for him to dig into whenever someone brings in a birthday treat that he can't eat.

Like Happy said, the proteins, iron, B vitamins etc. are very different with a GF diet. Be sure to either monitor or consciously fill in those gaps.

Some of our favorite brands:
Bread machine bread: Pamela's
Other bread, buns, bagels, pizza crusts: Udi's
Glutino pretzels, cookies
Tinkyada pastas

Good luck!
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Mom of DS, age 17, dx Crohn's and Celiac Oct 2008
- Remicade, started Nov 2013, added Solumedrol June 2015
- added Methotrexate/Folate March 2016
- Multivitamins, Probiotics, Vit D
- Small bowel resection, Jan 2013
12-11-2012, 01:39 PM   #53
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I swear by a whole foods approach to gluten free to manage my crohns- whole foods being the key asalot of packaged premade gf products are total junk food (corn starch, potato starch, proccesed sugars ect are triggers for me)

this is my favorite gf recipe ever. I make it a couple times a week and keep leftovers in the fridge to toast on busy mornings- gluten free buckwheat waffles or pancakes (buckwheat has no relation to wheat, it is gluten free)
http://domesticaffair.blogspot.ca/20...n-waffles.html

i skip the seeds, sometimes add squash or pumpkin puree and extra spices (cinnamon, nutmeg ect) today I made banana waffles... its a really forgiving recipe to play with!
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crohns disease, 11 years

gluten free, cow dairy free, coffee free, cane sugar free

probiotics, apple cider vinegar for low stomach acid, vit D, herbal mineral adaptogen tincture, herbal liquid iron& B vitamin supplement

fresh veggie juice daily

yoga for stress management
acupuncture&massage
self love

first surgery after 11 years of crohns- 80cm of small bowel removed march 4 2013

my food blog - www.shortguts.blogspot.ca
12-11-2012, 08:20 PM   #54
Crohn's Mom
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thank you bunny !
12-12-2012, 02:22 PM   #55
Patricia56
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Might find this website helpful.

http://www.cureceliacdisease.org/
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Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
12-24-2012, 09:51 AM   #56
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You were absolutely correct ! Even though I didn't see this until today, you were spot on!
I checked my blood sugar after dinner that evening ( my father in law in diabetic ~ he had the necessary equipment for me) after posting and it was only 65 ! After eating ! Not good at all !
So I tried to get by with drinking orange juice and eating a few lil candy sweets ~ then the next day I felt even worse and was honestly considering taking myself to the ER. I finally said forget it and ate some pasta ~ Lobster Mac N Cheese to be exact ! LOL ~ and presto! I felt a little better within minutes. for the next 2 days I just couldn't stop eating ! Small meals, but a lot of them ~ slowly by the end of that next day I felt "normal".
Honestly, it was quite scary for a bit
I am so much better now tho
and I won't be trying "gluten free" again, or any other "diet" that doesn't include carbohydrates

I felt a ton of guilt because I really wanted to try this with JJ so that he's not alone in it ~ Im grateful that my husband is continuing to stick with it tho and doesn't seem to mind

JJ continues to do well and I think it's actually, really, helping him.
He was quite disappointed that I had to stop, but I think he understands how literally sick it was making me and he's ok with it now
(hopefully ! LOL)
Hi to Crohns Mum and to JJ. May I ask how both of you are getting on? I have a 12 year old son who was diagnosed with Crohns last year and who has just gone GF. I think it may be helping but I don't know if it is just wishful thinking!
12-24-2012, 06:17 PM   #57
Dexky
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Hey T, is JJ still doing GF?? We've had EJ on GF for 8 months or so due to eosonophils that showed up on his last scope. It was more a suggestion than a recommendation but it hasn't hurt so we've stuck with it. We use "1,000 Gluten-Free Recipes" compiled by Carol Fenster.

He did not test positive for any food allergies so to be honest we are not as strict as one should be if they truly had celiac but I don't think it would be a huge leap for him.
12-25-2012, 07:18 PM   #58
Crohn's Mom
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No were not doing it any more. JJ decided that it wasn't helping him.
However , he does keep his intake of breads, pastas, etc to a minimum.
Also, recently he said he is considering going back on it because he thinks he was wrong. So, we may be trying it again soon ?
Thanks for the recommendation Dex- I'm glad it seems to be helping EJ some are you all doing it with him?
12-28-2012, 06:22 AM   #59
Dexky
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Noooo! It's so expensive!!
12-28-2012, 10:17 AM   #60
Crohn's Mom
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Yes it is !! The month we did it together was outrageous
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