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Crohn's Disease Forum » Your Story » Success Stories » Elemental and Elimination Success


 
08-19-2012, 12:52 PM   #31
Angrybird
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Well done happy!!!
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DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
09-26-2012, 01:27 AM   #32
sid
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congrats happy...feels good to read your sucess story.

@PaulPhoenix

can you tell us more about crohn's burning itself out after few years of remission..never heard of it but thats sounds interesting. I am currently in remission for almost a year and this statement of yours excites me.
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In remission since Diagnosis

Crohn's since Jan 2011.

No meds.
Diet as per ayurveda.
Vitamin D and B12 shots.
Currently experimenting with Probiotics, starting 2016.
And a large joint mad family, thus stress cant touch me.
01-10-2013, 03:20 AM   #33
happy
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An update:
Mostly I continue to improve. I recently have developed some increase in fatigue with a corresponding drop in iron levels, but no signs of bleeding visually or on testing, or any other symptoms. I stopped iron shots months ago, so I probably just still need them.

I recently managed a trip to Mexico and I was able to follow my limited diet! I continue to become more active, however my recovery has taken far longer than I ever expected. (It is not just the active disease process that I have needed to recover from--I have also needed to recover from the severe malnutrition and the severe disc protrusions that were caused from prolonged illness.)

I am still food testing--it is a long process.

I cannot tolerate dairy products, wheat, gluten, oats, fresh corn, cornmeal, red meat, pork, and brassica vegetables. I eat mostly cooked fruits and vegetables. I tolerate almonds but I haven't tested other nuts. Because of my limited diet it is still a challenge to eat out and to travel, however I am gradually learning how to do this successfully.

I use a lot of resources from people with food allergies. Whenever I begin to get frustrated with the restrictions of my diet (which is my own treatment choice) I think about the many parents coping with children with multiple food allergies whose reactions can be fatal. I am humbled by the parents dedication to sharing their resources about keeping their children healthy while trying to live a 'normal' life.

I have also just passed through a very stressful eight months (due to some family issues) without a relapse! So, I still consider myself firmly in remission. I do still take some supplementation of vitamins, minerals and iron.

I am aware that many on this forum are currently unwell--I remember my time of acute and prolonged illness and could not imagine a time in the future when I would be well. May you continue to have hope for a healthy future-- however that may be for you.

I am blessed--may you be as well.
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Diagnosed with IBD Sept. 2010
Enteral Nutrition induced remission in August 2011
Maintaining remission on Full Elimination Diet
01-10-2013, 04:52 AM   #34
DustyKat
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Thank you so much for the update happy.

It is so good to hear that things are still going well for you and with all the effort you are putting in you are staying on top of things and travelling! Well done, you are such an inspiration.



Dusty. xxx
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01-10-2013, 09:56 AM   #35
David
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That's amazing that you were able to stick to your diet on a trip to Mexico! Wow!

You mention the low iron levels. What sources of dietary iron are you currently taking?

Your ability to stick to your diet is inspiring

Continued success to you!
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01-10-2013, 12:24 PM   #36
happy
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Thank you for your kind remarks Dusty and David.

David, foods I eat with good levels of iron: chicken, fish, amaranth, almonds, chick peas, lentils, soy milk, and a variety of vegetables. I do drink tea--green, decaf and herbal and I don't eat much citrus fruit. The tannins interfere with absorption and Vit C helps absorption. So, I'm cutting back my tea consumption and adding lemon to it when I do drink it. I've also started adding molasses to my amaranth porridge.

I'll post again when I get my blood levels done again.
01-12-2013, 05:44 PM   #37
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Well done happy. Keep it up!

sid: just noticed I didn't reply to your request - really sorry. I just missed it! It was a statement in Prof John Hunter's book about treating Crohn's with EN and a reintroduction diet. At least that's how I remember it!
03-21-2013, 06:15 PM   #38
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The elimination diet definately works for me. I continue to avoid all foods that cause a flare. After a while a person can very easily determine which foods or liquids cause flareups. And you have to decide do you want to get sick again by eating something like Milk, coffee, icecream, orange juice, greasy & fatty foods, that you know you had problems the last time, after eating them.

I also drink 1/4 cup, 99% Aloe Vera Juice 2 times day when I start having problems & eventually the problems go away. Along with a good multi & an Enteric coated fish oil. I believe the Aloe is a key factor in my well being, since I do not use any prescription meds.

Happy, Glad to hear that you are doing well on that plan.
Has anyone here tried baby food in the jars during a flareup ? It really does help if you cant tolerate any milk products. Milk is a big instigator in causing crohns to flare. There are studies showing that milk has a certain bacteria that can cause digestive problems.
04-15-2013, 07:03 AM   #39
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Hi I have just joined. It is so good to read these posts as I am just setting off down this road. I posted already in the diet section that I have just started Elemental 028 Extra liquid, (finding it tastes fine,I think they improved it) on my 4th day of 6-8 weeks then hope to go on to a combo of SCD diet, but eliminating dairy and pulses and incorporating fodmap suggestions and re introducing more things gradually using the elimination diet method.

My consultant wanted me to go on azathioprine but has allowed me a while to try this route with the help of the in clinic dietician who is very supportive and optimistic knew about Dr Hunters approach at Cambridge. She wants me to stay on elemental so long to heal the mucosal lining making me more tolerant to food when I start eating again. My GP thinks it won't work and I will def need to go on meds. and only reluctantly prescribed the drinks as they are very expensive. About £5 a carton and I drink 9 a day!

My own research suggested that the Elemental drinks route is clinically proven to bring you into remission after 2-3 weeks, staying in remission with diet is not yet proven in a randomised trial but with lots of small trial and anecdotal evidence it can work. So it was great to read happy's story. If the drinks work the SCD should suit me as they work on the same principles of starving the bad bugs that trigger flares. (I think!)

The Medscape review of trials and literature said there is enough evidence to suggest it is worth giving diet a go. So I am! I notice there is a big US randomised clinical trial started on SCD diet with results in 2015.

Would love to hear about how any one else is doing on this path and if anyone uses calprotectin testing to monitor inflammation levels.

Last edited by Dee Dorset; 04-15-2013 at 07:05 AM. Reason: spelling
05-02-2013, 01:42 AM   #40
happy
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Dee Dorset,
I just remembered that helena101 used the EN diet and monitored with calprotectin. Try looking up some of her threads.
05-20-2013, 02:09 AM   #41
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This is the best, most thorough explanation of a successful elimination diet I have ever read. THANK YOU SO MUCH. I've been considering trying one myself, but I felt so completely overwhelmed by the idea that I've been too intimidated until now. Your post has encouraged me to take the next step. In fact this was my first post as a member of this forum. I stumbled upon it today, and was so thrilled you shared your experience. My experience with diagnosis, like many others, has been difficult emotionally and physically. It's a relief to have found a kindred spirit with a success story. I'd be interested in hearing about your experiences with "nightshade" vegetables, e.g. tomatoes, eggplant, peppers. I've heard they can be problematic for some.

MtnGirl

Diagnosed 07/12

Last edited by MtnGirl; 05-20-2013 at 02:34 AM. Reason: wanted to be more thorough
05-20-2013, 10:47 AM   #42
happy
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MtnGirl,
Welcome to the forum and thank you for your kind words.

I tested the nightshade vegetables much later in the process of elimination. I think potatoes are in this category and I started with small amounts of steamed potatoes, then cooked sweet peppers and then cooked, peeled and seeded tomatoes. I am just testing eggplant now. So, yes I can eat them now, but I added them quite late in the testing process. But, I am doing very well now, so I can eat their skins and seeds and small amounts of them raw.

Please share your journey with us in the My Story section of the forum.

Good luck with whatever treatment you choose; may you soon be feeling well.
05-20-2013, 02:58 PM   #43
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I'm glad mtngirl asked these questions as well! I've been doing fairly well on the elimination diet. Most foods I've tested outside of the main ones have been failure. I've been successful with potatoes if they are peeled. I haven't tried tomatoes yet; I've been nervous about the higher acidity of them.

I have really noticed that kefir milk is soothing and makes me feel better most of the time. I've been drinking it daily. I make homemade yogurt too and that's good and soothing.

Mtngirl, the elimination diet is one I had a tough time with because it is restricted, but the results are truly keeping me in line! When I stick to it I do feel so much better. I've tried to reintroduce a few foods - nuts, red meat, pork, white-bread gluten - all of which were failures. So mostly I've decided to stick to it. Seafood, fish and skinless boneless chicken all work well for me.
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Cindy

current diagnosis is undiagnosed (possible Celiac disease)

Colonoscopy done August 2013, no evidence of Crohn's seen, biopsies done and one polyp removed.
Polyp is precancerous adenoma

(Diagnosed with a diffuse astrocytoma (brain tumor) 5/31/13.
Craniotomy with tumor resection performed July 2013. 99% of WHO grade II diffuse astrocytoma removed, MRI scheduled every 6 months to monitor for regrowth.)
05-20-2013, 05:49 PM   #44
happy
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mccindy,
Glad to hear that you are having success with the elimination diet.
06-23-2013, 04:21 PM   #45
Mattie
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Thank you happy for the most accurate version of how to manage your Crohns through diet that I have ever read. Your summary of how the process works is spot on. I am a current patient of Professor Hunter and have managed my Crohns through diet under his guidance since being diagnosed four years ago. I currently take a low dose of asacol every day but that is all the meds I take and all I have ever taken. It may be that I will wean myself of asacol some time in the future but for now I am happy to take it.

It is important for those who think they might like to try this approach to follow the process slowly and not to skip any steps. It took me almost four months to test foods but now know that I cannot eat wheat, corn, oats, soy, dairy, citrus fruits, tea or coffee. Also, like most people with Crohns I have to watch the amount of fat and fibrous foods I eat but this is just a matter of trial and error.

I thoroughly agree with happy that the books Professor Hunter has written on the topic are well worth reading, probably more than once, so that the process is thoroughly understood before starting.
06-23-2013, 09:03 PM   #46
happy
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Hi Mattie, Thanks for the thanks!
I am glad to hear that you have had success with this method of treatment as well.
Please post in the My Story thread so we can learn a little about you.
12-17-2013, 03:06 PM   #47
happy
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Well, I haven’t updated for a while. While I still consider myself firmly in remission (now over two years) on the elimination diet after total EN, I have had some problems.

First, I have gained weight—too much weight--while following a gluten-free, dairy-free and corn-free diet (although I do tolerate small amounts of cornstarch), and free of other eliminated foods. There are many reasons for the weight gain: becoming healthier and no longer malnourished; moving to a larger centre with easier access to foods that I can tolerate, but that also have higher calorie counts and higher simple rather than complex carbohydrate content; and better absorption of fat and other nutrients. In other words, because I became healthier, I began to experiment more with foods that were not as healthy and nutritious although ‘safe’, that I did not make myself.

Second, this past summer/fall I did intermittently struggle for about four months: increasingly loose stools, nocturnal bowel movements, major bloating that was worse at night, some pain beginning again, possibly some blood, and feeling really yucky and tired. No sustained weight loss, though. However, I now believe that my symptoms were due to my own stubbornness that I try to eat more vegetables and fruits, especially raw (like salads). Also, I started eating more sweets, especially chocolate (high cacao content, non-dairy). So, I was eating more fat, fiber and sugar. I also tried to introduce ‘pure’ oats again and it took me several weeks to again realize that the oats were causing me problems.

This past month I would say that those symptoms have definitely resolved just with me being more diligent with my diet again. I have never knowingly eaten foods that I have eliminated (like gluten or dairy) but I believe that the experimenting with ‘allowed’ foods as described above did set me back for several months.

Despite this setback, I am still much healthier than I was the previous three years although it has been quite a learning year for me. I am still trying to find ways to eat ‘normally’: to entertain friends and family and to travel while adhering to my diet, without having to cook/order separate foods. This is still a great challenge. For instance I still have many ‘flops’ when trying to bake, and it is still very difficult to find a restaurant that I can eat at (or to cook a meal) that everyone likes as well. I think that it is a common experience with a chronic disease to want to live as ‘normally’ as possible, especially when one is feeling better. Testing and pushing the boundaries of the limitations of the disease is to be expected, but then this can create setbacks. I guess that this is what it means to live with a ‘chronic’ disease. I do recover from the setbacks very quickly now--rather than it taking weeks, it is only a day or two, and I haven’t needed formula to recover for at least 18 months.

Luckily, my ‘malnourished brain’ problems are much better—I can do most of the work that I want to do as long as I don’t get fatigued. My energy level is much better, but it is still not as good as pre-IBD days. Psychologically I am moving into a new mindset of ‘not being ill’ while still needing to allow for days of illness and recovery when necessary. I guess one would call this ‘wellness’, with ‘acceptance of chronic illness’. ‘Acceptance’ has snuck up on me recently, as I was so focused on just ‘getting to wellness’ for so long. Now I am beginning a time of just living my life, without so much focus on ‘illness’ or ‘diet as treatment’. Now it is just ‘diet as lifestyle’, even though diet is still my treatment. Still, it has taken much longer to get to this stage than I ever expected.

So, overall the EN followed by full elimination diet has been a successful treatment for me--I am so very blessed.

I would also like to add that being diligent with no cross-contamination of gluten (unfortunately, including ‘pure’ oats) and being diligent with no dairy, including the casein protein, are essential to keeping myself healthy. I sometimes wonder when others struggle to maintain remission when starting the diet if they know how gluten hides in foods such as soy sauce, on cutting boards, in Panini presses, pasta water, and toasters, etc.; and how dairy hides in ‘non-dairy’ milks, cheeses, yogurts, probiotics, etc.; and how they both hide in luncheon meat and sausage, medications and some EN formulas.

If you do take the time, effort and money to use EN followed by a full elimination diet as your treatment choice, please do educate yourself about the hidden sources of the foods that you may be sensitive to so that you optimize your chances of being successful. I did not begin to get success until I avoided cross-contamination.

Thank you for following my treatment journey. May you have success with your own treatment journey.
12-18-2013, 04:39 AM   #48
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Thanks so much for updating happy.

Despite some up and downs it is so fab to hear that you are still in remission. Well done!

Dusty. xxx
10-13-2014, 04:45 AM   #49
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Hi happy,

It's been nearly a year since you last updated, I would love to know how you're doing now?

Sarah
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Symptoms from the age of 12. Mis-diagnosed with UC at the age of 13, and later diagnosed with Crohn's in January 2012 at 24 years old. Disease mainly in terminal ileum.


Current meds:
Azathioprine, Allopurinol, Calcichew D3-Forte, Fortijuice, Alendronic acid, Ranitidine

Previous meds:
Augmentin, Doxycycline, Lansoprazole, Asacol, Pentasa, Prednisolone, Entocort, Cipro, Flagyl, Elemental Extra 028
11-05-2014, 06:53 PM   #50
happy
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Hi SarahD,
Thank you so much for asking how I am.
I am very happy (get it?) to report that I am doing extremely well. This past year has been the most normal one for me since diagnosis. I am still overweight; however, I am quite healthy.
I still cannot do everything activity-wise that I would like to all of the time. Some of this is because of some spinal issues (another very serious episode happened again this past year that I have mostly recovered from), some is due to aging, some is due to muscle loss from my initial IBD illness that I can't seem to recover, and some is due to plain old poor conditioning.

I rarely have digestive complaints unless I eat too much fat, fibre, fruits and veggies, legumes or eat away from home and mistakenly ingest a food that I react to.

There is no change in my diet from my last post--no foods added, none taken away.

The biggest change for me is probably that my diet as treatment is just now my lifestyle and part of my family's as well. I am very upfront everywhere I go about what my needs are. If I am invited to someone's for dinner, I just bring my own food and I don't make a big deal about it. I choose restaurants very carefully and again I am very specific at the beginning of the meal what my needs are. We purchased a small trailer that I can cook in, so this makes travelling much easier. If we fly somewhere, we stay somewhere that has cooking facilities.

The biggest issue with eating away from home is cross-contamination with gluten. I have learned to research the ingredients at restaurants, to view their labels and ask servers to check with the cook. I have left restaurants or chosen not to eat if I have any concerns. My recovered health is too precious to forfeit.

I always have with me an energy bar, plain soy milk, and rice cakes that are all safe for me to eat. This way I can participate in the activities just like everyone else without being concerned about where, when, or what I will be eating.

I am also learning how to cook things that appeal to my family members that I probably won't eat, but that won't cross-contaminate my kitchen either. So I will be attending a couple of Gluten-free baking classes to learn some techniques, but I won't be able to eat the food that I make as it will have dairy, corn and oats in it; and, although the food will not contain gluten, it will not have been prepared in a gluten-free kitchen so there is too much cross-contamination risk for me. I hope my family will enjoy the food and that I will enjoy baking it for them.

Although life is great for me right now, I so hope that any of you who are reading this post who are not doing well at the moment to please continue to have hope for your future. Four years ago all I could see ahead of me was more illness. Now I am blessed with good health. May good health be in your near future as well.
11-06-2014, 11:24 AM   #51
Mattie
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Well done happy. That's amazing. Like you I also follow the dietary route to control my Crohns under the watchful eye of Professor Hunter and, like you, I also am doing well 5 years on. Long may it continue.

www.crohns.org.uk
11-06-2014, 11:41 AM   #52
If*
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Hi Happy, on the liquid elemental diet (VivonexPlus) were you able to drink it or was it via tube. How did you handle the taste? Sorry to bother, just wondering if you had any tips.

Super to hear you are doing well!
11-06-2014, 12:21 PM   #53
happy
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Well, If* the stuff just tastes bloody awful.
But I was highly motivated to drink it because I had no other options. Although I had had a colonoscopy that showed the ulcerations in my small intestine, a GI consult was months away, I was rapidly losing weight, and the doctors in the community where I lived at the time didn't understand the urgency of my situation because I was overweight to start with.

I had already tried all ready-mixed liquid drinks that were available to me at the time. Vivonex was my last hope before a hospital admission in a community four hours from my home.

So, incredible motivation is a start. Then deciding on a plan before beginning, such as how long you are going to use EN for, what objective data you will use to make your decisions, what process you will use to resume eating solid food after, and what treatment you will use to maintain remission after EN (if remission is your goal), is really important.

So for me, the initial goal was to have nourishment that would keep my alive while I waited out the several months before my GI visit, then it changed to achieving remission and then it changed to maintaining remission while introducing food and finally it changed to just using EN if I became unwell while eating food. Always knowing why I was using EN was so very helpful to me to keep up my motivation.

None of this answers your questions about the taste--what I am trying to say is that the taste became secondary to the necessity of needing to use EN as treatment. As well, I would seek out stories about children who needed to use EEN and the difficulties their parents had in trying to get them healthy. I would remind myself that I had in fact had a long life of eating and that if I was never able to eat again, then at least i was blessed with my years of eating that some of these children would perhaps never experience in their lifetime.

So other than high motivation, mixed the next days' formula the night before, chill it and pour out what you need throughout the next day. I sipped without a lid throughout the day. Others prefer a lid so there is less smell and they drink it quickly at meal times. Others prefer an NG tube.
11-06-2014, 12:39 PM   #54
my little penguin
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Glad things are going well happy

I think you really hit the important thing
It's not about the food but the people.
There are chef card s that can be laminated to be sent back so they understand your dietary needs .
DS had food allergies for years so I get the bring your stuff with you
A rice cooker can make so many many things on the road


As far as drinking formula if
DS used a lid and a straw to bypass the taste buds
Pinching your nose also helps
DS did EEN for 9 weeks orally and has drank 2-3 shakes a day ever since for three years now .

Good luck !
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11-06-2014, 12:43 PM   #55
my little penguin
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Happy
Also color code your kitchen
Unsafe stuff on color coded cutting boards certain pans spoons etc... Certain areas as well if you have space
Little garage sale sticker red green also help after you read the label three times ( at the store unloading and prior to cooking ) so you don't get the bad stuff by accident.
Keep a seperate toaster and use foil in a toaster oven
Set certain burners on the stove for safe vs unsafe so it's habit
11-06-2014, 01:07 PM   #56
If*
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Thank you Happy, I was worried it was just me thinking what it taste like. I tried drinking it and just couldn't get past the taste. I applaud your diligence and motivation. I totally understand it is to be mixed with only water for the best chance of success for remission. The only way I think I could handle it would be the ng tube.

Your method and way of eating sounds similar to the Lofflex diet. Had you heard of that?

Thank you a bunch!! I really appreciate your reply.
11-06-2014, 01:24 PM   #57
happy
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Hi If*,
Yes it is Dr. Hunter's program that guided me. I used his book, info from another forum member and I looked up old studies of his. Unfortunately the LOFFLEX (Low Fat, Low Fibre, Partial Exclusion) diet did not work for me so I had to go back on EN and try his full elimination diet instead. This has worked well for me--no gluten, including 'pure' oats (and strict no cross-contamination policies), no fresh corn or corn meal, no dairy, no red meat, few raw fruits and veggies, low fibre, low fat, and fewer veggies and fruits in general is the main diet for me.
11-06-2014, 01:42 PM   #58
happy
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mlp,
Thanks for the tips--yup I have done all of that, but now I don't have to--at the moment I have the luxury of two kitchens as we have an unoccupied suite downstairs. Oh the joy and lack of stress in cooking and eating everything safely in my own kitchen! The gluten-eaters have been well trained to keep it in the downstairs kitchen and they are used to gluten-free only foods upstairs if I am doing the cooking. And I will soon try doing some gluten-baking downstairs, that again will be consumed downstairs. It is so much easier with all the comings and goings of young adults and their friends to not be explaining about safe and unsafe food handling. As well I get more help in the kitchen because people are not concerned about making me sick.
11-06-2014, 09:15 PM   #59
my little penguin
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Let me know if you need any gluten free recipes
DS was gluten free for two years and it all had to be made from scratch
Wacky cake is my favorite since its free of the top eight allegens
Next would be sundae brownies

Or gluten fee angel food cake yum
11-09-2014, 03:31 PM   #60
Noah
 
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Hello

Great to read this.

I have also followed a similar approach to you. Elemental diet with antibiotics for 7 weeks, then introducing food using John Hunter's approach.

The turn around of success was very rapid and I have been feeling great for months. However, Recent bloods and stool test have come back with a slight elevation of inflammation after months of no trace. My doctor wants me to go on Imuran.

Do you find it easy to eliminate specific foods? Do you get an immediate reaction or does it take a while until you know you have eaten the wrong thing?

Thanks
Noah
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