Should I Try This To Get Better?

[kdonov2]

My step-sister suddenly had a serious autoimmune malfunction of some sort in which she was allergic to EVERYTHING. She could not eat anything without becoming horribly ill for days on end. Her stomach was ulcered from the reaction she had to foods and she wasn't absorbing anything. Doctor's did not know why this happened, but her naturopath and gastro decided to work together and came up with a bit of an extreme solution, but it was their last resort. My step-sister was put on Neocate, a hypoallergenic children's formula. That was the only source of nutrition she was permitted for an entire 3 months. She did not eat, whatsoever. It is nutritionally complete and is an aminoacid formula that is not digested, just absorbed which makes it easy on the stomach and gives it a chance to rest and repair. After my step-sister slowly reintroduced food, most of her intolerances completely disappeared. She is actually able to eat gluten again, but tries to limit it. The only things she cannot tolerate at all are dairy and eggs. Otherwise, she is in great shape and the formula helped her greatly.

I am wondering if this is the route I should take. I have less severe reactions, but since going gluten and dairy free a year ago, I still suffer from SEVERE stomach bloating and water retention that literally makes me appear pregnant. The other symptoms are a general fatigue and stomach discomfort with a pins and needles feeling. I suppose I am also quite underweight (by 25 lbs), but I am not as bothered by that symptom.I have tried a day of supplementing with the formula before, and it actually relieved my absurdly bloated stomach the morning after. This makes me feel that the formula would work for me. Though it may sound drastic, I feel like I have tried everything and very much feel that this might be my answer. I am wondering what other people's thoughts are on this. Any feedback would be greatly appreciated.

[Reba32]

what other foods are you eating on a regular basis that you might also be intolerant to?

what are the ingredients in the formula?

Do you eat small meals at regular intervals, or one or two huge meals?

is it possible that you have a hiatal hernia? I know if I overeat or eat too fast, or if I get too hungry, my stomach gets painful. I have a "medium" hiatal hernia.

[GFinDC]

Hi,

Have you tried to find other food intolerances that may have developed since going gluten-free? If gluten-free isn't enough, it is probably a good idea to try an elimination diet. That's basically what you would be doing with the formula. But what then? You don't want to stay on the formula forever right? So at some point you have to go back to eating foods you aren't sure about and are at square one again. A very simple diet is a good way to start an elimination diet. You eat maybe 5 foods for a week and get straightened out, then start adding 1 new food every 3 days. If you have a reaction you drop that food from your diet. Pretty simple really.

[ravenwoodglass]

The fact you felt a bit better on the hypoallergenic fomula strongly points to your being sensitive to something more than gluten and dairy. My first thought is how much soy do you consume? I would drop that first and see if it helps.

[bristol]

My step-sister suddenly had a serious autoimmune malfunction of some sort in which she was allergic to EVERYTHING. She could not eat anything without becoming horribly ill for days on end. Her stomach was ulcered from the reaction she had to foods and she wasn't absorbing anything. Doctor's did not know why this happened, but her naturopath and gastro decided to work together and came up with a bit of an extreme solution, but it was their last resort. My step-sister was put on Neocate, a hypoallergenic children's formula. That was the only source of nutrition she was permitted for an entire 3 months. She did not eat, whatsoever. It is nutritionally complete and is an aminoacid formula that is not digested, just absorbed which makes it easy on the stomach and gives it a chance to rest and repair. After my step-sister slowly reintroduced food, most of her intolerances completely disappeared. She is actually able to eat gluten again, but tries to limit it. The only things she cannot tolerate at all are dairy and eggs. Otherwise, she is in great shape and the formula helped her greatly.

I am wondering if this is the route I should take. I have less severe reactions, but since going gluten and dairy free a year ago, I still suffer from SEVERE stomach bloating and water retention that literally makes me appear pregnant. The other symptoms are a general fatigue and stomach discomfort with a pins and needles feeling. I suppose I am also quite underweight (by 25 lbs), but I am not as bothered by that symptom.I have tried a day of supplementing with the formula before, and it actually relieved my absurdly bloated stomach the morning after. This makes me feel that the formula would work for me. Though it may sound drastic, I feel like I have tried everything and very much feel that this might be my answer. I am wondering what other people's thoughts are on this. Any feedback would be greatly appreciated.

I am right there with you. I want to try this myself. I have been gluten free for more than 2 years. Any mistake and I am so sick I am down for 6 days. I am not seeing a real improvement in my health except stopping the extreme deterioration I experienced just before I was diagnosed. I am insanely careful, won't go near any iffy foods.I am so frustrated. No doctors will listen. They talk to me like I go home and stuff myself with gluten and all I need a nutritionist to tell me not to do that. I really need help. Can you recommend to me the doctor who your step-sister saw.

[ravenwoodglass]

I am right there with you. I want to try this myself. I have been gluten free for more than 2 years. Any mistake and I am so sick I am down for 6 days. I am not seeing a real improvement in my health except stopping the extreme deterioration I experienced just before I was diagnosed. I am insanely careful, won't go near any iffy foods.I am so frustrated. No doctors will listen. They talk to me like I go home and stuff myself with gluten and all I need a nutritionist to tell me not to do that. I really need help. Can you recommend to me the doctor who your step-sister saw.

I am sorry you are still having such issues. Are you going with a whole foods unprocessed diet? Have you tried eliminating the most common co-intolerances? Soy and dairy (casien) are the most common problems. It took me 5 years to realize that soy was a huge issue for me. After dropping that things got much better quickly. Welcome to the board and I hope you are feeling better soon.

[bristol]

I am sorry you are still having such issues. Are you going with a whole foods unprocessed diet? Have you tried eliminating the most common co-intolerances? Soy and dairy (casien) are the most common problems. It took me 5 years to realize that soy was a huge issue for me. After dropping that things got much better quickly. Welcome to the board and I hope you are feeling better soon.

Thanks for your welcome. Yes I have tried giving up everything under the sun, with no real results. I feel like the digestive track is just damaged, and I can go for days feeling totally fine, and then all of a sudden get slammed with no apparent cause. I have done food diaries up the yin-yang, and have always eaten unprocessed food primarily my entire life. I ran a very busy alternative restaurant for 12 years - we had everything on variations of wheat, gluten, soy, dairy, sugar, free dishes, baked goods, raw food specialties, and my husband was head chef, so this as been my focus my entire adult life!!! This is why it is so frustrating.I have educated myself so much and still feel horrible some of the time.

I am coming around to hypothesize believe that it not the glutens fault, or the casein or anything else. Somehow my digestive system got really damaged and it need a total re-boot. That only a very extreme healing plan will help, and that perhaps 3 months on formula is not a bad thing to try out. I think that if I had a bad wound on my skin but did not let it completely rest and heal it would still be an open wound, and this is what I am doing to my digestive system.

I do welcome any comments. Thank you.

[kdonov2]

Actually, I do think I may have a problem with soy, but I have yet to cut it out completely, though I do try to limit it. I did go on a strict elimination diet for a month, but still had symptoms. Some sources will allow certian foods while others will recommend against it, but if there was any discrepancy between allowable foods from one elimination diet to another, I would just eliminate the food in doubt. I have also tried eating very small meals many times a day, such as protein bars or something, but that didn't help either. Nor did eating purely organic, sugar free, vegan, raw, soy/gluten free.

I don't think I have a hernia. The quantity of my intake varies, and yes, sypmptoms are worse when I ingest more food, but even when I eat small portions they persist. Mainly, my body seems to have the most trouble digesting fats and protein, though. Is that a symptom of a Hiatial Hernia?

The ingredients of the formula consist of many amino acids as well as few other ingrediens that seem a bit threatening like corn syrup solids and artifial flavor, but I was told that the corn syrup solids are actually just used in the refining process or something and are even tolerated very well by those with severe corn allergies. This is also explained by the fact that the formula is only absorbed by your body, not digested. I am not sure of the implications of that are, however, but that is how it was explained to me when I called the company.

I would only be on the formula for a few months. Then, I would slowly reintroduce the most hypoallergenic, organic/unprocessed foods. I think it would help, and gradually, I would be able to find out what I might be reacting to, but I feel that because my stomach is probably so damaged, it is reacting to everything and going on it for a while would help my system level out so that I can more easily identify the culprit foods.

These are the INGREDIENTS of the NEOCATE:

Corn Syrup Solids, Fractionated Coconut Oil, Artificial Flavors, Canola Oil, High Oleic Safflower Oil, Sucrose, L-Arginine, L-Glutamine, L-Lysine-L-Aspartate, Tripotassium Citrate, L-Leucine, L-Phenylalanine, Dicalcium Phosphate, L-Proline, L-Valine, Glycine, L-Isoleucine, N-Acetyl L-Methionine, Tricalcium Phosphate, L-Threonine, L-Histidine, L-Serine, Mono and Diglycerides, Sodium Chloride, L-Alanine, Magnesium Acetate, Choline Bitartrate, L-Tryptophan, L-Tyrosine, Diacetyl Tartaric Acid Esters of Mono and Diglycerides, M-Inositol, L-Ascorbic Acid, Artificial Sweetener: Sucralose, L-Cystine, Propylene Glycol Alginate, Taurine, Ferrous Sulfate, L-Carnitine, Zinc Sulfate, DL-Alpha Tocopherol Acetate, Niacinamide, Calcium-D-Pantothenate, Manganese Sulfate, Cupric Sulfate, Thiamine Chloride Hydrochloride, Pyridoxine Hydrochloride, Riboflavin, Vitamin A Acetate, Folic Acid, Potassium Iodide, Chromium Chloride, Sodium Molybdate, Sodium Selenite, Phylloquinone, D-Biotin, Vitamin D3, Cyanocobalamin.

[mommida]

You had better be under a doctor's strict care.

Children can not sustain enough caloric intake with neocate and splash, and usually end up on feeding tubes. Most allergic reactions happen because of the proteins. That is why this formula is amino acids. It somewhat proves it is an "allergic" type reaction that is happening.

Have you even tried allergy testing? You really should be working with a gastro doctor to determine if there are other causes. i.e. H. Ployri, Eosiniophils, parasites, and quite possibly Lyme disease. All underlying causes that would make a neocate liquid diet extremely dangerous.

[Black Sheep]

I don't mean to sound rude or crude, but have you been tested for parasites? I know that that's a disgusting thought, but I once read an interview with Ann Louise Gittleman, in which she talked about how, as a Nutritionist (and she has other abbreviations after her name which I can't decipher!), she ate all the right foods; only whole, organic, healthy-as-can-be foods. She said something about it being such a "purified" diet that she was amazed to find that nevertheless, she had parasites in her "purified" body! And I do know that parasites can wreak havoc with the stomach, as I have an aunt who, as her dr. put it, "picked up a parasite" while in Spain many years ago, and to this day her stomach will suddenly act up and quite painful, for no apparent reason. No, her dr. was never able to get rid of whatever type parasite she has, but then, she goes to mainstream drs. who aren't the least bit interested in natural remedies. There are a lot of natural remedies out there for parasites, if you suspect maybe that's part of your problem.

[kdonov2]

I plan on going on medical supervision, but I have been finding such poorly informed doctors who are skeptical of or poorly informed about food intolerances or whom I fear are needlessly making me take expensive tests. I have also not been tested for allergies, though I have been tested for dairy and gluten through enterolab. The hope was that after taking the neocate, my intolerances would disappear and I wouldn't need testing or at least if I did get it they would come back negative.

Bristol, sorry I am unable to recommend a doctor for you. My sister lives in AZ and I am in IL. She worked with a close, collaborating team of naturopathic and a gastro doctors.

I have not been tested for parasites.Though it seems a bit unlikely just because I have had these problems since birth, but it was a good suggestion.

[ravenwoodglass]

I plan on going on medical supervision, but I have been finding such poorly informed doctors who are skeptical of or poorly informed about food intolerances or whom I fear are needlessly making me take expensive tests. I have also not been tested for allergies, though I have been tested for dairy and gluten through enterolab. The hope was that after taking the neocate, my intolerances would disappear and I wouldn't need testing or at least if I did get it they would come back negative.

Bristol, sorry I am unable to recommend a doctor for you. My sister lives in AZ and I am in IL. She worked with a close, collaborating team of naturopathic and a gastro doctors.

I have not been tested for parasites.Though it seems a bit unlikely just because I have had these problems since birth, but it was a good suggestion.

Another thing you could do would be to call every allergist in your area and ask if they help with intolerances and elimination diets. They will skin test you first and take a survey of what you usually eat. Then the doctor will give you a starting point of 5 or so foods that are nonallergenic. If your symptoms, or when your symptoms get better you then add one food at a time for a week in pure form. The starting point or diet that you start out with will be designed for you with items you should tolerate. It will also be done in a way so that you are getting all the nutrition and calories you need.

Whatever you do I hope you get some relief soon.

[Reba32]

here's the WebMD info on hiatal hernia

Open Original Shared Link

some of your symptoms also sound a bit like diabetes (tingling extremeties, water retention) have you ever been tested? If not, you *really* don't want to try the formula without being tested first. If you have diabetes starving yourself with the forumula could have severe repercussions.