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Nutrition Drinks - I Am Starving Here!
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I am having a real problem. I can't seem to eat gluten, peanuts, all sugars and anything that contains them including fructose (even the small amount in onions!), artificial sweeteners, milk, cheeses...

I had a scoop of refried beans for breakfast - this seems to be the only thing I can eat, that and cashews. When I eat the other things above, I:

  • run a fever
  • get a hot flushed face
  • get a migraine
  • joint aches
  • extreme fatigue
  • and D

I think I have systemic candida very bad but still waiting on sinus surgery and cultures.

For now, I am starving to death. I have been looking into nutrition drinks, like medical food for tube feeding, because ensure and other drinks have flavoring, sweeteners, and other junk.

Any one ever do this? Any good places to buy from?

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no clue what to tell you! good luck though! have you tried things like lactaid? that could help w/ the dairy. I hope you find something you can eat, and soon! I hate being hungry!

((((((HUG))))))

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Well, you'll need a prescription. Do you have a doctor that will do that for you? I work for Nestle, and at my facility we make (among other things) tube feeding pouches and complete nutrition drinks. They both come in unflavored varieties, but I'm pretty sure that both contain maltodextrin and milk proteins. HOWEVER. There is a product called FAA (Free Amino Acids) which is completely hydrolyzed. It's the grossest damn thing ever, but it's meant for people who can't tolerate anything else or can't break down any proteins. You can look into something like that.

Another thought, although this might be a little strange, is infant formula. The soy based don't contain any milk.

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I didn't know you could get nutritional drinks from your doctor. I asked and was told to try Ultra Meal, Ensure, etc.

BTW, Ultra meal has oat bran in it ... found that out the hard way. :(

Just in case your doctor won't prescribe something for you, I only found 1 nutritional powder that was gluten and allergen free.

Living Harvest hemp protein powder - the only ingredient is hemp (this won't make you high :D ) you should be able to find it at your local health food store or try livingharvest dot com

nutrients are 14g protein, 8g fiber, 1g sugar, 2.5g total fat, thiamin 34%, calcium 6%, B6 14%, Magnesium 52%, c 2 %, iron 25%, niacin 8%, E 2%, potassium 11 %

and 1 protein powder

NutriBiotic vanilla rice protein - contains brown rice and vanilla flavor

I put these in the blender with bananas, molasses, etc.

marcia

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many protein powders are gluten-free. I don't know if they have many chemicals in them, but if they don't then you could try those in some sort of drink. If you can't tolerate anything sweet then I wonder if you mixed it with a herbal tea if that would make it tolerable.

I drink boost and there is definitely sugar in that, I don't think anything like that would work.

Hope you get better!

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Well, you'll need a prescription. Do you have a doctor that will do that for you? I work for Nestle, and at my facility we make (among other things) tube feeding pouches and complete nutrition drinks. They both come in unflavored varieties, but I'm pretty sure that both contain maltodextrin and milk proteins. HOWEVER. There is a product called FAA (Free Amino Acids) which is completely hydrolyzed. It's the grossest damn thing ever, but it's meant for people who can't tolerate anything else or can't break down any proteins. You can look into something like that.

Another thought, although this might be a little strange, is infant formula. The soy based don't contain any milk.

Thanks for the input everyone and for the support!! I found some gluten free tube-feeding formula in amazon .com's health area that you don't seem to need a prescription for. I also see a site called imed.com that sells Nutren 2.0 by Nestle that is gluten free & sugar free and I don't think you need a prescription. I was thinking of getting these because milk seems to be the least problematic of all the others. Some of them have fructose/fiber complex, so I don't know.

I actually had organic Similac in my grocery cart today, came so close to buying it. I bought organic gerber infant rice cereal instead - so it is funny that you mentioned that.

I guess I never thought about going to the doctor for help right now until a friend suggested it today, too. The Dr. just said don't eat gluten while we clear up other health issues - I didn't tell her or realize at the time that it is so much more than gluten.

How long can a human live on refried beans? :blink:

Thanks!

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That's interesting. If you can buy the Nutren, go ahead and try it. I was under the impression that everything was by prescription only, because if we want to get some for family members we need to furnish a prescription.

Anyway, I can assure you that they are 100% gluten-free. There are no gluten products made in our facility at all.

The fiber is pea fiber.

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Thanks for everyone's help.

Had sinus surgery today - sphenoid sinus was filled with a solid fungus - the entire sinus in the middle of my brain had a gelatinous fungus - isn't that gross?

If I recover, maybe I can eat sugar again!! They took it all out so maybe my brain won't swell and fever when I eat, no more expansion - now I have to make sure it never comes back.

I don't have HIV, or Hepatitis, or RA, or Lupus, or lots of stuff I have been tested for - but you must have a comprimised immune system for this to be possible, I am almost hoping it is Celiac (because I can't eat gluten now too) because for the most part it can be reversible with diet, right?

I could do without a whole bunch of weird health problems. :rolleyes:

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I hope the surgery helps and you are on the road to recovery. Hopefully it was the celiac that was causing your problems. If you stay gluten-free, then you shouldn't have any new autoimmune problems, and most past damage heals, but some people have developed conditions before they were diagnosed that don't go away.

Good luck healing and feel better soon!

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I am having a real problem. I can't seem to eat gluten, peanuts, all sugars and anything that contains them including fructose (even the small amount in onions!), artificial sweeteners, milk, cheeses...

I had a scoop of refried beans for breakfast - this seems to be the only thing I can eat, that and cashews. When I eat the other things above, I:

  • run a fever
  • get a hot flushed face
  • get a migraine
  • joint aches
  • extreme fatigue
  • and D

I think I have systemic candida very bad but still waiting on sinus surgery and cultures.

For now, I am starving to death. I have been looking into nutrition drinks, like medical food for tube feeding, because ensure and other drinks have flavoring, sweeteners, and other junk.

Any one ever do this? Any good places to buy from?

Hi,

You sound much like me. I have about 8 foods that I am not allergic to. I happened to be looking for a recipe today with soy (one of the few things I can have) and happened upon your post. I can honestly say I know what you are going through. Your sinus problems really struck me, because I have the same thing. I have been trying to figure out my problem for years, with little help from normal Drs. This year there seems to be great improvement in what I am finding out. I can tell you what has helped me and what I am doing, although I am in the midst of these things so can't speak to how it turns out. I can say there has been much improvment though. Here goes. I really believe in the testing from Enterolab and if you haven't had any of that testing done, its worth every penny. Second, I would highly recommend professional (not over the counter) digestive enzymes. If you want a referrel I would be more than happy to give it to you (no, I don't sell them or make any money on referring anyone). Third, many chiropractors use what is called Kenesiology )not sure of the spelling) and can do food allergy testing and elimination! They can also have lots of testing done for things like hormone (adrenal) imballances, toxic metals, etc. and etc. That has been a GREAT help to me. They CAN actually neutralize food allergies! Many people don't believe they can, but I can tell you that it DOES work from experience. Fourth, there are many people (more than once thought) that have what is called IGA deficiency. That is what they think I have. Not sure yet, as I haven't been tested, but I have all the symptoms...frequent ear infections, sinus problems, congestion etc. and etc. Foods congest my body and that's that. The normal medical field says there is no cure. They only treat the congestion with antibiotics (results in candida etc.) and anthistimines etc. The natural field, goes for the root cause, as it does with celiac. I keep reading posts of people just like me that are only eating one or two foods because everything else makes them sick in one way or another. It sure seems like the IGA anitibodies are messing us all up. There is a way out and there is hope, you just have to find the right practitioner that understands it all and will be patient (no pun intended) with you. I am in Colorado Springs and have found a wonderful lady chiropractor whose own daughter was ill so she jumped right into other areas of natural medicine to help others. She has studies for 10 years and knows her stuff. She has boxes of viles for testing food allergies and I was allergic to most all of them. There were just a few that I wasn't allergic to! Don't give up, go looking for someone that can work with allergy elimination and go for it! I really think all the things that I have mentioned are important, just doing one won't be enough. I hope this helps....I am not usually one the computer on Sundays, so must have been meant to see your posting! :) Have a great day and keep looking up!

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Hi,

You sound much like me. I have about 8 foods that I am not allergic to. I happened to be looking for a recipe today with soy (one of the few things I can have) and happened upon your post. I can honestly say I know what you are going through. Your sinus problems really struck me, because I have the same thing. I have been trying to figure out my problem for years, with little help from normal Drs. This year there seems to be great improvement in what I am finding out. I can tell you what has helped me and what I am doing, although I am in the midst of these things so can't speak to how it turns out. I can say there has been much improvment though. Here goes. I really believe in the testing from Enterolab and if you haven't had any of that testing done, its worth every penny. Second, I would highly recommend professional (not over the counter) digestive enzymes. If you want a referrel I would be more than happy to give it to you (no, I don't sell them or make any money on referring anyone). Third, many chiropractors use what is called Kenesiology )not sure of the spelling) and can do food allergy testing and elimination! They can also have lots of testing done for things like hormone (adrenal) imballances, toxic metals, etc. and etc. That has been a GREAT help to me. They CAN actually neutralize food allergies! Many people don't believe they can, but I can tell you that it DOES work from experience. Fourth, there are many people (more than once thought) that have what is called IGA deficiency. That is what they think I have. Not sure yet, as I haven't been tested, but I have all the symptoms...frequent ear infections, sinus problems, congestion etc. and etc. Foods congest my body and that's that. The normal medical field says there is no cure. They only treat the congestion with antibiotics (results in candida etc.) and anthistimines etc. The natural field, goes for the root cause, as it does with celiac. I keep reading posts of people just like me that are only eating one or two foods because everything else makes them sick in one way or another. It sure seems like the IGA anitibodies are messing us all up. There is a way out and there is hope, you just have to find the right practitioner that understands it all and will be patient (no pun intended) with you. I am in Colorado Springs and have found a wonderful lady chiropractor whose own daughter was ill so she jumped right into other areas of natural medicine to help others. She has studies for 10 years and knows her stuff. She has boxes of viles for testing food allergies and I was allergic to most all of them. There were just a few that I wasn't allergic to! Don't give up, go looking for someone that can work with allergy elimination and go for it! I really think all the things that I have mentioned are important, just doing one won't be enough. I hope this helps....I am not usually one the computer on Sundays, so must have been meant to see your posting! :) Have a great day and keep looking up!

Thanks for your help. I have become much worse since the last post. One of my doctors is actually looking at Lyme Disease which can sometimes cause all of the above - plus I think I went gluten-free and ended up eating a lot of corn & rice - now I think my whole problem may be with corn!! I have a Celiac test in the works, LD test in the works, and going back to allergist on 12/22 to look at IgA allergies? I had ZERO IgG antibodies to any of the 23 streps after 500 million infections. My doctor wants to send me to Mayo clinic. There are no homeopathic or naturapathic doctors in my area - but I may venture out because no one knows anything! Thanks!

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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