Our 12 year old daughter has recently been diagnosed with (so far) a "relatively mild case" of Crohn's. Seems to be showing slight improvement - having just started a product called UltraInflamx (suggested by her Naturopath) plus her GI doctor has her on Asacol (5 ASA). Now he is recommending 8 weeks of (only) Modulen - however - a recent allergy (IgG) test suggests she is producing a high level of antibodies to dairy (including casein) as well as to soy - both of which are contained in this product. Has anyone with similar food allergies had success with Modulen? Or does anyone know of meal replacement alternatives for IBD that are free of all common allergens such as dairy, soy, gluten??... Any comments appreciated. Thanks folks!
Can Modulen help despite dairy/soy allergies?
- Thread starter all4healing
- Start date
Help Support Crohn's Disease Forum:
DustyKat
Super Moderator
- Joined
- May 8, 2010
- Messages
- 25,247
Hi all4healing and :welcome:
I'm sorry to hear about your daughter...:hug: I hope she continues to respond to treatment and is soon in remission.
I don't know much about the Enteral Nutrition (EN) products but we have quite a few members, including those with children, that have experience in this area. We have an EN forum so have a browse and you will find quiet a bit of info. The stickied threads, at the top of the thread list, have links to the manufacturers websites so you may find some answers there too. Here is the link to the forum...
http://www.crohnsforum.com/forumdisplay.php?f=161
...also ask questions in that forum as well.
There is a parent's forum so pop by and say hello, we would love to see you there....
http://www.crohnsforum.com/forumdisplay.php?f=49
Good luck and keep us posted!
Dusty. xxx
I'm sorry to hear about your daughter...:hug: I hope she continues to respond to treatment and is soon in remission.
I don't know much about the Enteral Nutrition (EN) products but we have quite a few members, including those with children, that have experience in this area. We have an EN forum so have a browse and you will find quiet a bit of info. The stickied threads, at the top of the thread list, have links to the manufacturers websites so you may find some answers there too. Here is the link to the forum...
http://www.crohnsforum.com/forumdisplay.php?f=161
...also ask questions in that forum as well.
There is a parent's forum so pop by and say hello, we would love to see you there.
...http://www.crohnsforum.com/forumdisplay.php?f=49
Good luck and keep us posted!
Dusty. xxx
Thank-you!
Thank-you so much for the information and the warm welcome - hope your kids are doing well.
Thank-you so much for the information and the warm welcome - hope your kids are doing well.
Hi and welcome. You asked a good question! I was wondering the very same thing recently. My son is also allergic to all dairy & casein too via serum allergy testing and one doctor recently suggested a strict elimination diet - which may begin with some form of an elemental diet. We see our GI next week to discuss this more.
Thank-you!
Thank-you for your reply - if I learn anything more about this at my end, I'll certainly share with you..... your story is heart-wrenching and I wish your son the very best... keep the faith! xo Blythe in Canada
Thank-you for your reply - if I learn anything more about this at my end, I'll certainly share with you..... your story is heart-wrenching and I wish your son the very best... keep the faith! xo Blythe in Canada
Just an update - my daughter has just begun an 8 week trial of Modulen. As expected, The GI specialist was dismissive of the allergy results - thinking it highly unlikely that anyone her age (12) could have a casein allergy, nor did he believe it would disrupt the effectiveness of the treatment. Hoping he's right - we'll give it a try - and researching online, it seems there are many positive reports about the Modulen - despite it seeming rather 'old school' - full of corn syrup, sugar and dairy. Meanwhile - we're looking for safe flavouring options as the flavour pots are not available where we live. A straw with saran wrap over the glass helps, and we discovered - it also helps if she sniffs a bag of fresh coffee beans while drinking!! However if it turns out she doesn't tolerate the casein in the Modulen - I'd like to further her time on the Ultrainflammx as she was doing pretty well and gained 3 lbs with this, while also taking Asacol. I'll continue to report her story - hoping it might, in some way, benefit others....
Hello all4healing,
There are alternatives to the Modulen. I believe that the formulas Vivonex T.E.N. and Tolerex are milk and soya-free. They are available from Nestle: http://www.nestle-nutrition.com/Products/Product.aspx?ProductId=bc535404-a19e-4c6f-8558-90eaf6a5556f
I would call Nestle to find out for sure.
Having just been through several months of EN followed by an elimination diet, I personally would not consume a formula that has my probable allergens in it. I think that I would be wasting time, effort and money and unnessessarily increasing the time that I would need to be food-free because of a possible reaction to the formula. I would ask to be referred to the IBD dietician and then ask the dietician to help me find a suitable formula. As well, I would contact the allergy specialist to see if he/she could help.
I live in Alberta and EN is not a very common treatment here, so the docs don't know much about the different formulas.
By the way, a member of my family who is a physician didn't 'believe' in lactose intolerance until he developed it!
Good luck to your daughter. :goodluck:
May her treatment be successful and may she soon be eating some of these again: :cookie:
There are alternatives to the Modulen. I believe that the formulas Vivonex T.E.N. and Tolerex are milk and soya-free. They are available from Nestle: http://www.nestle-nutrition.com/Products/Product.aspx?ProductId=bc535404-a19e-4c6f-8558-90eaf6a5556f
I would call Nestle to find out for sure.
Having just been through several months of EN followed by an elimination diet, I personally would not consume a formula that has my probable allergens in it. I think that I would be wasting time, effort and money and unnessessarily increasing the time that I would need to be food-free because of a possible reaction to the formula. I would ask to be referred to the IBD dietician and then ask the dietician to help me find a suitable formula. As well, I would contact the allergy specialist to see if he/she could help.
I live in Alberta and EN is not a very common treatment here, so the docs don't know much about the different formulas.
By the way, a member of my family who is a physician didn't 'believe' in lactose intolerance until he developed it!
Good luck to your daughter. :goodluck:
May her treatment be successful and may she soon be eating some of these again: :cookie:
Thank-you so much Happy.... I will indeed be in touch with Nestle to see what other options are available.... though the doc has talked us into at least giving Modulen a fair try. Our dietician is .... well let's just say, I'm learning there must be quite a difference between a dietician and a nutritionist, because I don't feel I'm necessarily getting 'nutritional' advice! however... that seems to be the medical model.... so it's up to us to do our own research and ask the right questions.. I admire the way you've taken charge of your own health and the discipline and dedication you have in following a diet. Now you're reaching out, helping and inspiring others..... that's true healing, when you transform that energy and 'serve'!!....
Thanks again for your advice and well-wishes.
Thanks again for your advice and well-wishes.
all4healing,
Thank you for the kind words.
I hope that all goes well.
dannysmom,
The EN followed by an elemental diet treatment path can seem very long, and I found that my expectations initially were too high; I wanted, and expected, to have results very fast as I was quite ill at the time. However, I realize now that, just like with other treatments, it is a lifestyle adjustment with setbacks along the way.
If you and your child can set small, achievable goals with the EN and the diet, and then periodically reflect on your progress, you might find that it is easier to manage this change in the way that your child eats.
I believe that if you choose this treatment path, you and your child will be highly motivated to stick with it. :goodluck:
Thank you for the kind words.
I hope that all goes well.
dannysmom,
The EN followed by an elemental diet treatment path can seem very long, and I found that my expectations initially were too high; I wanted, and expected, to have results very fast as I was quite ill at the time. However, I realize now that, just like with other treatments, it is a lifestyle adjustment with setbacks along the way.
If you and your child can set small, achievable goals with the EN and the diet, and then periodically reflect on your progress, you might find that it is easier to manage this change in the way that your child eats.
I believe that if you choose this treatment path, you and your child will be highly motivated to stick with it. :goodluck:
Similar threads
