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EEN support and advice needed

Hi Everyone!

TLDR: I have ileal CD but do not seem to be able to tolerate the EEN formulas available in Europe, and would like to give Kate Farms a chance, but they do not ship to Europe. I would like to ask if someone in the US could help me - either by recommending a company to whom I could order a bunch of Kate Farms and they could ship it to me for a fee of course, or if someone could offer their time and address to do the same for me - I would cover everything of course. Independently I am not 100% about my Crohn's diagnosis so would appreciate some input there too.

Long version:
I am 28M and have been diagnosed with CD recently, although the doc is not 100% certain - I have been having IBS-D for basically as long as I can remember, as well as SIBO based on lactulose breath test, but since October liquid / loose stools became constant, up to 5 times per day, along with some abdominal pain. I have been very successful controlling the symptoms with dietary changes, first CDED, and recently with probiotics + SCD (had to exclude quite a few things like dairies that the diet would otherwise allow), and currently experiencing 1 solid BM per day. However my calprotectin did not go down yet. All my typical blood markers and ASCA etc have been normal, my ileocolonoscopy and biopsy and MRE showed mild non-specific ileal inflammation before I started on the SCD.

At the same time I have had some not-so-Crohnie things too: my histamine levels are moving up and down, sometimes in the sky, but tryptase is very normal - most recent allergy test from few weeks ago showed significant elevation of Cationic Eosinophil Protein and once I also had mild eosinophilia. Another very weird thing is, EEN has significantly exaggerated my symptoms, I tried Modulen, Ensure, Pediasure, all of them gave my stomach cramps, gas, and diarrhea, I was feeling way worse on them than with solid food, but no IgE mediated allergy has been found. This seems quite atypical to Crohn's as far as I can tell. I am suspecting there is something in these formulas that I do not tolerate but am very determined to make it work and would like to avoid taking immunomodulators / biologics / steroids unless all else fails. I am also reluctant because I was able to get symptom free with the dietary changes mentioned above, but would like a reliable EEN as backup, and if needed potentially take it long term. I have found the Kate Farms formulas that are hypoallergic and are not made from milk proteins, and want to give it a serious shot, but they do not ship to Europe. I would like to get a few boxes over to me, as I will be travelling to the US in August and would find a way to get a big bulk back with me if it works out. So I am looking for someone to either recommend a shipping company in US or ship it themselves to me, of course I would cover everything and more if needed.

Any help or insight on above would be very appreciated.

my little penguin

Staff member
You are only looking at polymeric formulas
Basic over the counter intact chains
A lot of folks woth crohns have trouble with these
There are semi elemental and elemental formula
Elemental is the most broken down into amino acids so no intact proteins to cause an allergic reaction and is used for EoE (eosinophilic esophagitis) -not IgE driven

nutrica is one company which makes neocate jr
Elemental formula
Other is elecare jr made by Abbott
Vionex is another
Please talk with your Gi they will have samples and then you can try them
They are horrific taste wise most need an ng tube

good luck
Thx, have just ordered Elemental 028 to see if that helps, thats actually available here. Do you think there is a good chance this is caused by intact proteins rather than something else in the formula? I kind of wondered that myself because I thought its mostly for people with severely impacted digestion, while I have much less problem with whole foods. But then again the issue might be these specific proteins in polymerics. I tried the vegan almond Ensure too, it felt better, but still not great, so it might be one of the supporting carbohydrates? Will ask my GI too once I manage to get in.

Anyways will see how Elemental 028 goes, I am kind of afraid of the taste in the long term, because I loved the polymerics, so if anyone in the meantime could help me with Kate Farms that would still be appreciated :)