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darlindeb25

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Rachel--24 Collaborator
You sound like you have some really great doctors!

Yeah...I hope so. Its been a 4 year wait with no answers and a whole string of really bad doctors. All of a sudden I'm getting all my answers in the last couple weeks and it feels good but also a little overwhelming.


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darlindeb25 Collaborator

I have to say, I understand overwhelming. I feel like a truck ran over me last night--I thank you all for the info, yet am so frustrated. I read that just because you couldn't tolerate certain foods in one way, that maybe you can in another--it never occurred to me that I am making myself sick. I have the "why me's" tonight and can't shake them. I will though and I will get myself in a better frame of mind and researh all this. Thank you so much.

CantEvenEatRice Enthusiast
I have to say, I understand overwhelming. I feel like a truck ran over me last night--I thank you all for the info, yet am so frustrated. I read that just because you couldn't tolerate certain foods in one way, that maybe you can in another--it never occurred to me that I am making myself sick. I have the "why me's" tonight and can't shake them. I will though and I will get myself in a better frame of mind and researh all this. Thank you so much.

I wonder why there isn't a certain medicine or even alternative medicine to heal a leaky gut. How do you heal your gut when you cannot eat anything? I am confused because they say to eliminate foods that bother you, but for me that is almost everything. Then if you eat the same foods over and over, you can become intolerant to those too! What do you do? How do you heal yourself?!

Rachel--24 Collaborator
I wonder why there isn't a certain medicine or even alternative medicine to heal a leaky gut. How do you heal your gut when you cannot eat anything? I am confused because they say to eliminate foods that bother you, but for me that is almost everything. Then if you eat the same foods over and over, you can become intolerant to those too! What do you do? How do you heal yourself?!

If the leaky gut isnt healing there's probably something still causing damage to it. Lots of things can keep the lining inflamed and prevent healing. Candida, parasites, food intolerances, some medications, alcohol, sugar, caffiene...a whole bunch of things can keep a leaky gut "leaky". If you have some undiagnosed illness like what I had...The Lyme weakened my immune sytem...Dr.s gave me antibiotics for various reasons and each time I got worse...probably because the antibiotics were allowing candida to overgrow and my immune system wasnt strong enough to fight all this stuff. It just turns into a cascade of events. Candida causes leaky gut and food intolerances. The more things the immune system is dealing with the more burdened it becomes and the situation just keeps getting worse.

I've read all kinds of stuff about taking this or that supplement to heal a leaky gut but I just dont think its all that easy. I think you have to get to the bottom of whats really causing it to begin with and you need to treat that problem in order for the body to start healing itself. If you're body is still fighting Lyme...then your immune system would be under some heavy strain and with that....other problems can develop.

diamondheart Newbie
If the leaky gut isnt healing there's probably something still causing damage to it. Lots of things can keep the lining inflamed and prevent healing. Candida, parasites, food intolerances, some medications, alcohol, sugar, caffiene...a whole bunch of things can keep a leaky gut "leaky".

Well said Rachel! Don't forget ibuprofen too. I took a lot of ibuprofen after my surgery in April, and I think it was damaging my intestines. Ibuprofen does irritate the small intestines.

I'm doing a lot better, by the way, after testing for additional food intolerances (IgG) and finding the bacterial dysbiosis. I asked for a lot of these tests. I'm hopeful that my gut will heal, but it takes time. I pretty much have to cook all my own food. Deb, look at the list of things I can't eat in my signature. It's pretty long and includes all those foods that are in everything. The silver lining is that I am eating way better than I ever have, and I have been forced to become a better cook!

Simply V, I read part of your blog, "Maybe it's stress...". One of my acupuncturists was trying to convince me that my intestinal problems were due to stress. I was so mad at her. I mean, you expect an alternative healer to be sympathetic, but they have their issues too!

Claire

Budew Rookie

I need to know how you all happened to get tested for Lyme's disease. Thanks something I've never considered.

I too have a growing number of intolerances and am down to a few precious foods. The list gets smaller every couple months.

I see a guy in integrative medicine. He says enzymes are necessary to help me heal. Have any of you tried this approach?

Simply-V Newbie
Simply V, I read part of your blog, "Maybe it's stress...". One of my acupuncturists was trying to convince me that my intestinal problems were due to stress. I was so mad at her. I mean, you expect an alternative healer to be sympathetic, but they have their issues too!

Claire

I've heard the "its stress" thing before too. But thats not my blog. Thats the blog of another writer on the No Corn blog.


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diamondheart Newbie
I've heard the "its stress" thing before too. But thats not my blog. Thats the blog of another writer on the No Corn blog.

Oh, you're the other V :P ! I like how there are 3 writers on one blog!

Claire

Simply-V Newbie
Oh, you're the other V :P ! I like how there are 3 writers on one blog!

Claire

I like it too.. Gives more perspectives than just one. Its great especially since everyone's experiences with these things are always different.

Pilgrim South Rookie
I am an old hand at this, been gluten free now for 5 yrs July 06. My sister is a dietician and gluten free 5 yrs last March. She does wonderfully on a gluten free diet, all the gluten gone, she can eat almost anything she wants, minus glutens. I on the other hand have developed so many other intolerances--soy, corn, rice, nightshades, many veggies. I eat chicken breast, cod or flounder, tuna, green beans, peas, and carrots. I can still eat dairy, including yogurts, cheeses, ice cream and I drink coffee, tea, sometime orange juice. I am so at a loss for what to do next. After 5 years, I am so depressed about all the foods I can't have. When I went gluten free, I felt so much better and I didn't miss gluten, I still do not miss gluten foods, but I do miss gluten-free breads, cookies, tinyada products--all those things that make our lives easier. I have neuropathy, full body, small fiber in my legs, feet, and torso..my arms, shoulders, and neck are more involved--my neck and shoulders causing daily headaches. I do not take medications as of yet, I'm afraid of illness from the meds. Am I missing something??????

Dr. Peter Green's nutritionist, Anne Lee told me there is no way for the doctors to know who actually will heal inside and who may not, she says I may gain back some of the foods after being free of them for over 6 months--seems no one knows for sure and I understand that logic. If I eat something questionable for me, I will react with tummy aches for well over a week--I can't afford to be sick, me being my only income.

Does anyone else here deal with this too and can you give me thoughts, sites to check out--anything?

Thank you, Deb

Hi Deb,

I am spending the afternoon ready through some of the posts and what a shock to find so many others like me that can only eat a few things, even though we are gluten free! If anyone finds a solution, I sure would be interested in hearing it! I weigh about 90 lbs and that's after working very hard for a year to gain several pounds back. I can't eat any sugars, including honey and fruits, corn pot, tom, rice, beans, nuts, dairy, eggs, etc. and etc. Its easier to tell you what I can eat...red meat (organic) and "some" vegetables. So, my breakfast, lunch and supper are just about always the same..salad/meat. I am taking very good digestive enzymes and they have just increased my program to see if my gut just needs to heal more. I have been gluten free for 6 years, but just discovered I have been regularly getting into gluten. Even a tiny amount wrecks our bodies, and I am finding that out the hard way.

People have suggested I rotate my foods, but there aren't enough to rotate! Would love some suggestions! Thanks Pilgrim

Simply-V Newbie
I weigh about 90 lbs and that's after working very hard for a year to gain several pounds back. I can't eat any sugars, including honey and fruits, corn pot, tom, rice, beans, nuts, dairy, eggs, etc. and etc. Its easier to tell you what I can eat...red meat (organic) and "some" vegetables.

Sorry to hear you're having such issues.

Have you been tested for IgE food allergies? Namely, corn, wheat, rice, grains etc. (cane sugar is a close relative of all these btw), beans/legumes, nightshades?

From what you've listed as foods you can and cannot eat... it sounds a lot like my lists of foods. Though most of mine is due to avoiding corn.

Corn is everywhere. Organic red meats most likely do not have corn additives (citric acid wash) to increase shelf life like most others as many corn allergic individuals seem be to ok with organic beef. You may want to check eatwild.com to see if you can find a good supplier near you.

Honeys are usually contaminated with corn pollens or corn syrup. Fruits have cornbased waxes. Tomatoes are often canned with cornbased citric acid or fresh are waxed with cornbased wax. Veggies are sprayed with citric acid to clean them and retain color. Ditto for beans. Nuts are often sprayed with an edible film (corn) to keep them from molding or going rancid. Dairy is massively contaminated with corn.

So I know the pain of not being able to eat. Despite a corn allergy.. I am also allergic to milk, eggs, and beans.

Maybe we should start our own restaurant? The 3 Ingredient Gourmet. :)

Budew Rookie

I am in the same boat. Only a few foods left.

Yesterday someone posted Open Original Shared Link. Only 5 foods contain gluten.

I made a spread sheet listed each limiting reason.

It was uplifting. There are several things I've never tried and intend too.

I also am dealing with the pain issue. I take hydrocodone daily. It doesn't do anything but take the edge off. Other pain meds had too much tylenol to agree with me. I am going to try Amitritlone for the migranes this month. I hope it works. Hydro does not touch that pain. I've even had a couple emergency room visits over the pain issue. I have no formal diagnosis, how did you get diagnosed?

I weigh 110 lbs and fight to keep it there. I flirted with 80 lbs for several years. It's tough.

Hang in there!

happygirl Collaborator

One of the things that is highly suspected in me because of my numerous food reactions is eosinophilic disorders. They can affect children and adults, affect your esophagus, your stomach, your intestines, and/or your colon. It can be mediated through food allergies/intolerances (they are learning more about allergies and intolerances being involved) and/or environmental allergens. Some people have only one food issue, some have multiple, and some can only get nutrition through a tube...it is all very variable.

Here are some great links---Open Original Shared Link and www.apfed.org

Because I have been on such a limited diet, I am going back to eating all the bad foods (except for gluten) before my endo/colonoscopy so that they can check for Eos. But, I don't know if I can test positive since I've been modified for so long....treatments include diet modification/elimination, certain meds/steroids, and elemental formulas (for those who need it). One of the articles I read said that anyone with multiple food issues should consider eos. I don't know if I have it, obviously, but just wanted to share what I have learned. PM me if anyone would like more info.

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  • Posts

    • AlwaysLearning
      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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