Elemental Diet - Hypoallergic Protein Free (Hospital) Formula

[CNV2855]

Pretty sure that 17 years of undiagnosed Celiac Disease developed into Sjogren's and damage to endocrine glands. Every single time I've been glutened, I get a flare. Last few years, I've been gluten-free but not CF and while there was some improvement it wasn't that significant other than the resolution of gastroinestinal symptoms. I have problems with a lot of proteins now, especially casein/fish and possibly soy. I have a flare of symptoms everytime I ingest protein and it's hard as hell for me to identify which proteins are causing the problems.

Fasano released his study and in it is data that suggests that his patients w/ Celiac Disease who had been on a gluten-free diet for over two years still had over a 30 fold increase in intestinal permeability over healthy controls. 30x. This would explain the fact that autoimmune symptoms often partially reside but never completely disappear when people with celiac disease and other autoimmune disorders follow the gluten-free diet.

My symptoms subside greatly and quickly if I fast. Within 24-48 hours I feel great and very little inflammation. Food is causing my disease, I know it. So I did some research and I came across these studies:

Open Original Shared Link

Is rheumatoid arthritis a disease that starts in the intestine? A pilot study comparing an elemental diet with oral prednisolone

Abstract

Objectives: This pilot study aimed to determine if an elemental diet could be used to treat patients with active rheumatoid arthritis and to compare its effect to that of oral prednisolone.

Methods: Thirty patients with active rheumatoid arthritis were randomly allocated to 2 weeks of treatment with an elemental diet (n = 21) or oral prednisolone 15 mg/day (n = 9). Assessments of duration of early morning stiffness (EMS), pain on a 10 cm visual analog scale (VAS), the Ritchie articular index (RAI), swollen joint score, the Stanford Health Assessment Questionnaire, global patient and physician assessment, body weight, erythrocyte sedimentation rate (ESR), C-reactive protein (CRP) and haemoglobin, were made at 0, 2, 4 and 6 weeks.

Results: All clinical parameters improved in both groups (p<0.05) except the swollen joint score in the elemental diet group. An improvement of greater than 20% in EMS, VAS and RAI occurred in 72% of the elemental diet group and 78% of the prednisolone group. ESR, CRP and haemoglobin improved in the steroid group only (p<0.05).

Conclusions: An elemental diet for 2 weeks resulted in a clinical improvement in patients with active rheumatoid arthritis, and was as effective as a course of oral prednisolone 15 mg daily in improving subjective clinical parameters. This study supports the concept that rheumatoid arthritis may be a reaction to a food antigen(s) and that the disease process starts within the intestine.

Effect of elemental diet on mucosal immunopathology and clinical symptoms in type 1 refractory celiac disease.

Olaussen RW, Løvik A, Tollefsen S, Andresen PA, Vatn MH, De Lange T, Bratlie J, Brandtzaeg P, Farstad IN, Lundin KE.

Source

Laboratory for Immunohistochemistry and Immunopathology, Institute of Pathology, University of Oslo, Oslo, Norway.

Abstract

BACKGROUND & AIMS:

Patients with celiac disease (celiac disease) who do not improve or exhibit villous atrophy on a gluten-free diet may have type 1 refractory celiac disease (RCD) with a polyclonal mucosal T-cell infiltrate, or type 2 RCD with a monoclonal infiltrate, also termed cryptic T-cell lymphoma. Both conditions are difficult to treat. Here we describe the effects of a nonimmunogenic elemental diet on clinical symptoms and mucosal immunopathology in type 1 RCD.

METHODS:

Ten celiac disease patients on a strict gluten-free diet were diagnosed with type 1 RCD after extensive clinical evaluation in a tertiary referral hospital. A 4-week amino-acid-based liquid elemental diet regimen was given with no other treatment, except in 1 patient who also received methotrexate. Duodenal biopsy specimens were obtained before and after treatment for histologic assessment, immunophenotyping of intraepithelial lymphocytes, T-cell receptor clonality, mucosal interleukin (IL)-15 expression, flow-cytometric analysis of interferon (IFN)-gamma-secreting T cells, and whole biopsy specimen IFN-gamma messenger RNA determination.

RESULTS:

Nine patients completed the treatment; however, 1 patient did not tolerate the diet. Histologic improvement and reduced epithelial IL-15 were seen in 8 patients, whereas IFN-gamma-secreting mucosal T cells and IFN-gamma messenger RNA levels decreased in 4 and 7 patients, respectively. Clinical improvement was noted in 6 patients, with 1 patient showing normalization of hypoalbuminemia. Three patients could discontinue their total parenteral nutrition.

CONCLUSIONS:

Persistent mucosal IFN-gamma and IL-15 production often occurs in type 1 RCD despite conventional treatment. Elemental diet is a therapeutic option that can provide long-term immunopathologic and clinical improvement of this difficult condition.

I'm surprised I've seen no mention of people trying an elemental diet on this site, especially among those with continuing autoimmunity and refractory celiac disease. It seems like a great way to ensure that you're completely gluten free and not being exposed, even if it's temporary. This is one of the best treatments for Crohn's and UC and the first line of treatment for both diseases in Japan. There are half a dozen studies showing efficacy in other AI diseases.

I think I'm going to try it for three weeks and see how I feel. Has anyone had any experience with this sort of thing?

[YoloGx]

Welcome to the forum!

Your proposed diet sounds interesting. I don't know how many here go off protein to get better. I know for me it would not work. Which is not to say it wouldn't work at least for a while for you and others. Eventually however you would likely need to eat some protein just to be healthy and not fall apart.

It may be that some types of protein are better for you than others, and vice versa with those that are difficult for you to metabolize. Pancreatic digestive enzymes might be in order, especially at first. Taking good enterically coated probiotics can also be a big help.

Many here find that if they eat some basic whole gluten-free grains (like cooked whole brown rice) with some meat and lots of vegetables with no sugars added, it really helps.

There are those here who go off all grains. There is the specific carbohydrate diet--which is one type of grain free diet. Another is the Paleo Diet. I have tried both. Certainly they are a great way to also lose weight! However for myself I eventually discovered I had to go off high and medium salicylic acid foods to be healthy--SA is in a huge list of foods and herbs that you can find out more about on the internet.

Many find they have multiple food sensitivities and allergies--since with celiac or severe gluten intolerance one usually develops leaky gut syndrome and thus often a multiplicity of sensitivities going on. Lactose, casein, soy, corn, or even aged food are often likely culprits--as well as sugar. Candida overgrowth or bacterial dysbiosis can also be a factor.

Gluten sensitivity is at least a potent contributor for most auto immune conditions it appears. Have you read Dangerous Grains by Braly and Hogan?

If you don't have salicylic acid sensitivity, or need to be on a specific carbohydrate diet, you might find that taking marshmallow root will help soothe and heal your gut more. Dandelion root can be very detoxing, which often is necessary when one has a lot of inflammation. Both seem to be safe for celiac since they are not immune stimulants.

For myself I find eating a lot of greens plus taking chlorella tablets really helps. Parsley is also very detoxing and refreshing for most of us. Its great in a vegetable smoothie.

Exercise of course is key as well as drinking lots of water. And nowadays, avoid radiation as best you can.

Let us know how your experiment works for you.

Bea

[sb2178]

Just to clarify, the diet being discussed is not protein-free. It is consuming only amino acids (single molecules of protein) as opposed to the typical chains of amino acids that make up proteins in foods.

And, no, I haven't seen any discussion of it. I believe that you might need to work with an RD and/or MD for it. It reminds me of TPN. Update us on how it goes. Seems like it could be an interesting approach for refractory celiac. A couple weeks to calm down, then gradually add things one at a time...?

[Alex J]

My son was on elemental formula as a toddler due to multiple severe food allergies (he now has celiac; he hadn't developed it/wasn't diagnosed at the time). Formula is the only form in which an elemental diet is available. The biggest problems with this idea as I see it are firstly, the cost - it is stupendously expensive and unlikely to be covered by insurance and secondly, the high likelihood that you will be unable to drink enough to sustain yourself, due to the extremely unpleasant flavor. It doesn't just taste bad; it tastes epically, unimaginably awful. And as an adult you would need to ingest a great volume, you couldn't just force down the odd cup. Infants can sometimes be induced to like it, presumably because their tastes are unformed, but most children toddler age and up who need it in any volume will need it to be tube fed.

We were never able to get enough of it into him, and as he did have some foods (fruits and vegetables and some grains) we would hide the formula in there. It was a constant struggle even so. However he started growing again when he was on it, and I really think it saved him.

[domesticactivist]

I like what the others had to say on this. I haven't tried it and don't know much about the elemental diet. The samples in the study were small - it would be interesting to see larger trials done.

It strikes me that they were taking people who were not doing well gluten-free and then putting them on the elemental diet without trying basic things like eliminating all grains, sugars and lactose first. I wonder if a more moderate choice would have had similar effects? There seem to be many here who do much better with more dietary changes than just gluten-free.

We do the GAPS diet which gave us all sorts of improvements we didn't see when just gluten-free. It starts out based entirely on bone broths and naturally probiotic foods, and eliminates di and polysaccharide sugars, and all grains, most legumes, and fibrous veggies are not introduced right away. Everything is organic and homemade. It's very similar to the SCD mentioned above, except it starts in phases and doesn't have as much sugar. It might be an easier and more cost effective thing to try than the elemental formula. When in doubt I always go for real food, anyway.