Can Anyone Help Me With More Sites?

[darlindeb25]

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

[happygirl]

Deb,

I am in a similar boat to you and I am so sorry.

This one helped me--Open Original Shared Link (Ursula has it in her signature, also)

I am in the process of being tested for a ton of stuff. If I figure anything out, I'll let you know.

Have to run to church-PM me if you'd like.

xoxo, Laura

[Simply-V]

  darlindeb25 said:

.... 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 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??????

Its possible you are. I don't know how much "corn" you're avoiding but several of the foods you mentioned that you eat can contain small amounts of corn which might be causing the headaches. Now I don't want to discourage you by eliminating more foods for you, but there are generally substitutes so the food isn't eliminated you just have to be picky about it.

As far as I am aware there is not a safe ice cream (unless you make you own) as all the flavorings contain some kind of corn syrup or corn alcohol. Same goes for flavored yogurts. Plain full-fat yogurts seem to be ok such as Dannon & brown cow.

Some coffee's are corn contaminated. Look for coffee's made by the Swiss Water Process. Tea bags are often made using a corn glue to seal the bag or the bags are dusted with corn starch in the packaging process. Look for loose teas.

Not all OJ's are corn-free. Many have minor amounts of corn derivatives added during processing or packaging. Minute Maid Original in the frozen can is fine.

Many milk products are corn-contaminated. The added vitamins in milk are often in a corn or soy based carrier. Organic Valley makes an unenriched milk. Sour Creams often have corn starch added (modified food starch) Daisy full-fat is corn-free.

Many fruits and veggies are sprayed/rinsed with citric acid wash (cornbased) to help retain their color and freshness. Fruits are also waxed with corn based waxes. Organic veggies seem to be safer from this, and washing fruits with baking soda seems to get off most of the wax (peeling afterward helps further).

For further links on this, go to the link at the bottom of my sig.

___

That said.. with Neuropathy.. There are a couple concerns.. such as diabetes and an odd IgA Neuropathy which has to do with kidney failure.

[diamondheart]

Hi Deb,

I remember you from Braintalk. Good to see you again. Well, I know you probably know a lot already, but I find that the information on multiple food intolerances/leaky gut syndrome is lacking. There seem to be a whole host of things that can cause it. For me, it seems like the best thing to do is to start going down the list of possible causes, and get tested for those things. That way, you can start eliminating what isn't a problem and focus on what is a problem. Can you tell us the things that you already have been tested for?

Thanks, Claire

[CantEvenEatRice]

I have the same issues!!! It is so strange that so many of us have developed tons of food intolerances AFTER going gluten free. Of course, some were probably there all along, but now I get sick pretty quickly from foods I cannot handle. I feel like I cannot eat anything anymore. It is really frustrating! I wish there was more information on this. People just do not believe when you start listing off every food you cannot eat. Most say, "Well, what can you eat?"

[darlindeb25]

CantEvenEatRice--you are so correct. At work I get so tired of saying, "No, not that either!" Then I hear, "WHAT CAN YOU EAT?" It is frustrating. In the beginning I was doing so well and I lost about 60. I am one of the celiacs that gained weight instead of losing while ill. Now that I have developed all these other intolerances, the weight is raising again and it is very frustrating.

Claire--I have not checked into leaky gut--I didn't know that is something I should be reading up on. My sister tells me I need more fiber, told me to use flax meal, yet it makes me ill. I feel so defeated.

Simply-V--Wow, that all spooks me. I never knew corn was in so much. I haven't tried it in some time, but I was able to eat fresh corn or frozen corn, I just couldn't have processed corn. Anne Lee told me that was normal for some celiacs. Now, I can eat potato chips, but not fresh potatoes. I will have to read up in the corn sites now.

Laura, thank you for responding too.

I honestly feel trapped with this. Are there lists of corn free things? I feel like all I do is start over and over and over. Sorry, I am just so frustrated by it all. It would seem celiacs alone is enough for any of us to deal with. By the way, my neuropathy is caused by the vitamin and mineral deficiencies I suffered for so long. I was sick for over 25 yrs before I knew about celiacs.

Thank you all so much. Deb

[Helena]

Simply V---I briefly checked out your site (will look at it in more detail later). I was interested in the whole issue with the citric acid in the Whole Foods' 365 soda. I can totally see that happening. By the way, I asked my allergist which corn-derived ingredients are safe for people with a corn allergy (seeing as I have one)--I said I had no idea. He replied that he doesn't either---no one does. He is a very well respected researcher--clearly he would not say that citric acid is safe for people with a corn allergy. I don't know where these companies get their info. on what's safe!

other sites where they deal primarily with allergies but also with intolerances: allergicliving.com; peanutallergy.com. the allergic living site is relatively new and there aren't a *lot* of posters like here, but it is a very active site. (there is a long thread on corn allergy--check under "other allergies") peanutallergy.com is dedicated to peanut allergy . . .but a lot of people there are dealing with a lot of other dietary restrictions as well.

[mouse]

V - I just read part of your link about the 365 Whole Foods Soda. I just bought 3 - 6 packs as they are suppose to be corn free and use sugar. How much corn is in each can of soda. I only drink about 1 or 2 cans a week.

[Rachel--24]

Deb,

There are lots of possibilities. Definately sounds like leaky gut is a likely cause for the growing amount of intolerances.

My list of intolerances is huge....I react to almost ALL foods. I eat like 5 things right now.

I went to more Dr.'s.....trying to figure out whats going on. Like you...my symptoms are primarily in my head, neck and shoulder region.

My Dr. said possibly Lyme Disease...it can cause alot of food and chemical intolerances and the head/neck symptoms along with alot of other symptoms I had. He tested me and he was right. It looks like in my case Lyme probably "triggered" my gluten intolerance and the list of symptoms/intolerances just kept growing from there.

Dont know if you've ever been tested for other things that may have triggered your Celiac but have since went undiagnosed?? Like Celiac the testing for Lyme isnt a perfect science....some labs are better than others and false negatives are common. If interested pm me for testing info.

Hope you can get to the bottom of things.

[shai76]

Yeah, I'm in the same boat. I keep developing terrible allergies. I get tested at the doctors office, they tell me I have new food allergies and have to completely avoid stuff. Then about a half a year later I start getting symptoms again, go back to the allergist to find out I developed even more allergies. Pretty soon I will be on elemental formula instead of food (no joke). I want to know why I'm like this, and how to make it stop. Some of the allergies are even life threatening, others just make me miserable.

[CantEvenEatRice]

  shai76 said:

Yeah, I'm in the same boat. I keep developing terrible allergies. I get tested at the doctors office, they tell me I have new food allergies and have to completely avoid stuff. Then about a half a year later I start getting symptoms again, go back to the allergist to find out I developed even more allergies. Pretty soon I will be on elemental formula instead of food (no joke). I want to know why I'm like this, and how to make it stop. Some of the allergies are even life threatening, others just make me miserable.

It is nice to know others are struggling with the same thing I am dealing with. I really thought I was going crazy when I started developing sooooo many intolerances. I was treated for Lyme with iv antibiotics after I was diagnosed with Celiac. I then had my gallbladder and appendix out. Then I got pregnant with my first child. I did well during my pregnancy, but did start to notice the food intolerances increasing. After I stopped breastfeeding, my food intolerances dramatically increased and they keep getting worse. I keep trying to figure them out...first I thought maybe the iv antibiotics caused problems in my intestines, then I thought the pregnancy triggered them, then I thought maybe it is some hormonal imbalance after pregnancy....I just don't know either! It is so frustrating and scary because I too feel like I will end up not being able to eat ANYTHING!

[Rachel--24]

  Can said:

It is nice to know others are struggling with the same thing I am dealing with. I really thought I was going crazy when I started developing sooooo many intolerances. I was treated for Lyme with iv antibiotics after I was diagnosed with Celiac. I then had my gallbladder and appendix out. Then I got pregnant with my first child. I did well during my pregnancy, but did start to notice the food intolerances increasing. After I stopped breastfeeding, my food intolerances dramatically increased and they keep getting worse. I keep trying to figure them out...first I thought maybe the iv antibiotics caused problems in my intestines, then I thought the pregnancy triggered them, then I thought maybe it is some hormonal imbalance after pregnancy....I just don't know either! It is so frustrating and scary because I too feel like I will end up not being able to eat ANYTHING!

Are you certain the Lyme was treated effectively?? I'm very new to Lyme Disease but from what I've read and from what my Dr.'s are telling me....antibiotics arent always effective and definately not short-term antibiotics. Long-term antibiotics are ususally required and sometimes there are other infections present which require different treatment. My Dr.'s are telling me that Lyme isnt usually "cureable" once it becomes a chronic infection...but I can get better and it can be managed but will likely always be there.

Also as a result of weakened immune system I got candida overgrowth and leaky gut which is probably the main cause of my intoleraces. I guess it was kind of a snowball effect...one thing led to the next and since the Lyme went undiagnosed I could just never get better and the intolerances escalated.

[CantEvenEatRice]

  Rachel--24 said:

Are you certain the Lyme was treated effectively?? I'm very new to Lyme Disease but from what I've read and from what my Dr.'s are telling me....antibiotics arent always effective and definately not short-term antibiotics. Long-term antibiotics are ususally required and sometimes there are other infections present which require different treatment. My Dr.'s are telling me that Lyme isnt usually "cureable" once it becomes a chronic infection...but I can get better and it can be managed but will likely always be there.

Also as a result of weakened immune system I got candida overgrowth and leaky gut which is probably the main cause of my intoleraces. I guess it was kind of a snowball effect...one thing led to the next and since the Lyme went undiagnosed I could just never get better and the intolerances escalated.

I definitely had Chronic Lyme when I was diagnosed so I know it is probably still an issue. I spent 6 months on a picc line giving myself iv antibiotics every night. I had an allergic reaction when they switched my antibiotics so I had the line removed. Plus, the doctor and I agreed that 6 months was enough at the time for my body. I agree that you can only get to a certain point with treating Chronic Lyme. I never can figure out if most of my problems now are a result of Celiac, Lyme or both. But I did not have all of these intolerances before being treated for Lyme. I actually went on the gluten free diet, felt a little better, but not great so I had more testing and then they found the Lyme. I wonder though if such long term iv antibiotics actually hurt more then it helped. I also spent a few years on prednisone because 1 of the million doctors I saw said I had some type of hormone imbalance (this was before my Celiac diagnosis). I wonder if the prednisone did some damage to my gut as well. It is really hard to figure it all out. I feel like I have the snowball effect too!

[Rachel--24]

  Can said:

I wonder though if such long term iv antibiotics actually hurt more then it helped. I also spent a few years on prednisone because 1 of the million doctors I saw said I had some type of hormone imbalance (this was before my Celiac diagnosis). I wonder if the prednisone did some damage to my gut as well. It is really hard to figure it all out. I feel like I have the snowball effect too!

I've read that steroids are one of the worst things when you have Lyme. They weaken the immune system and allow the Lyme to really progress. I was on Prednisone too...but only for about a week. I felt like I got worse after that.

Also the antibiotics...I was on them on and off as Dr.'s didnt know what the heck they were doing or what they were treating. I KNOW those made me worse....I think thats what really helped the candida and really got the intolerances going.

My Dr.'s arent gonna give me antibiotics for the Lyme....not anywhere in the near future anyway. They say it will make me worse and I have no doubt they are right. They're gonna go about treating everything in a way that my body will be able to handle it and they're gonna concentrate on eliminating intolerances and other stuff thats bringing my immune system down before they go after the Lyme. So that my immune system will be much less burdened and more capable of fighting the Lyme along with the treatment. There are other "alternative" treatments for Lyme which are sometimes more effective. I think they will use antibiotics last...when things are better under control and my immune system is much stronger.

I'm not sure exactly all thats gonna happen because I was only diagnosed a couple weeks ago....so its all very new. I was told there are sooo many strains of Lyme...many that they havent even identified yet....I guess thats why its very difficult to completely erradicate it. Plus the bacteria is smart....it knows how to survive and how to "outwit" the immune system. It seems really complicated but I'm hopeful now that they know whats going on. They say I can get better and live a normal life w/out worrying about intolerances and sensitivities and such. I hope its true.

[rinne]

  Can said:

I also spent a few years on prednisone because 1 of the million doctors I saw said I had some type of hormone imbalance (this was before my Celiac diagnosis). I wonder if the prednisone did some damage to my gut as well. It is really hard to figure it all out. I feel like I have the snowball effect too!

I have heard that prednisone can drive the Lyme deeper into the body making it harder to recover. Were you on prednisone after your diagnosis? Also, that antibiotics only work for about 70% of people infected with Lyme. Sorry,I know that is not good news.

I have also recently received a Lyme diagnosis and have the same understanding that Rachel does, it is possible to manage it but once you have it you are never rid of it. As a friend says, don't mess around with Lyme, it doesn't play fair.

[Rachel--24]

  rinne said:

As a friend says, don't mess around with Lyme, it doesn't play fair.

No...it certainly does not.

[diamondheart]

Hi Deb,

Here are some references for you. The first is a Open Original Shared Link. I am seeing the acupuncturist who wrote this. I was diagnosed with bacterial dysbiosis, and overgrowth of bad bacteria in the gut. Luckily, I do not have Candida or some of the other protozoan parasites. Dr. F is treating me with herbs.

I'm also wondering if I have an IgA deficiency since my total intestinal IgA was very low. Many people with celiac disease have an IgA deficiency. Here is a publication that describes in simple terms what an IgA deficiency is: Open Original Shared Link

There are also some decent articles written by Leo Galland, MD, on the subject:

Open Original Shared Link

Open Original Shared Link

Here's a little more in depth on intestinal dysbiosis, caused by Candida or bacteria:

Open Original Shared Link

When I find some other good websites on leaky gut syndrome, aka intestinal permeability, I'll pass them along.

Claire

[darlindeb25]

Thank you Claire for the sites, I will read each one. Thank you everyone for responding--it truly is much easier when you know you are not alone. The feeling that eventually I will not beable to eat anything has very much been on my mind and it does help that I am not alone.

Rachel--I truly do not think Lyme disease is my problem, eventually I may get tested for it, BUT, my sister is a diagnoses celiac, as is our dad--so I am pretty sure it's a family trait now . I feel that 3 of my kids have this, yet they aren't sure they want to know. They don't want to deal with going gluten free. My daughter, without a shadow of a doubt is gluten intolerant and also corn, but she doesn't want to give up certain foods. Even the cancer scare hasn't effected her yet. I have a son with a violent temper, who is not on anti-depressants and I am willing to bet gluten is a factor. My father was 69 at diagnosis and will probably never repair inside--he has so many health issues. My sister is doing great. My sister was 43 and I was 46 when we went gluten free, she in March and I in July.

Deb

[Simply-V]

Deb - Its not unusual to only react to processed corn. Though it could be a sign of two things.. A. You're only allergic to ripe corn (type of corn used for processed corn) or B. you're allergic to sulfites in which processed corn is treated with sulfites before processing. Either way, its an avoid corn problem. There is also a debate on how much corn is actually absorbed into the body from whole kernels as the outer skin of the kernel is not digested by the body, which may explain also your lack of reaction to whole kernels.

Helena - go to Open Original Shared Link there is a list of all the different names for corn. Some react to all of them, and some only react to a few. It just depends on your sensitivity. Most IgE corn allergic persons do react to citric acid made from corn. Also watch for yeasts & Xanthum gum.

Mouse - Whole Foods knows they're not corn-free. If you find your store is still claiming them to be corn-free, you need to let Whole Foods HQ know. They can get sued. As for how much corn is in a can.. well that depends.. I'm pretty sensitive and one can messed up my digestion for a week. I would try to return them to Whole Foods. They should take them back, if they don't ask them to call Corporate. Corporate will make them take it back if you were told they were corn-free only to find they aren't. Now, they (Whole Foods) claim that the only corn is in the citric acid, so the rootbeer is supposed to be corn-free. However I don't trust the company that makes it to be honest about the source of their flavors as they are often derived from corn, but its up to you if you want to try it. Btw, Virgil's Rootbeer and Cream Sodas are corn-free.

[mouse]

Thank you V. I will take them back the next time we go there.

[CantEvenEatRice]

  rinne said:

I have heard that prednisone can drive the Lyme deeper into the body making it harder to recover. Were you on prednisone after your diagnosis? Also, that antibiotics only work for about 70% of people infected with Lyme. Sorry,I know that is not good news.

I have also recently received a Lyme diagnosis and have the same understanding that Rachel does, it is possible to manage it but once you have it you are never rid of it. As a friend says, don't mess around with Lyme, it doesn't play fair.

So what kind of treatment are you both going to have for Lyme? I probably need to go back to the doctor to discuss it. She did say that treating Lyme would be a lifelong thing (I was just hoping it wouldn't be!). I was so difficult to spend so many months on the picc line. I cannot imagine doing that again. What are some other options? I would like to have another child and am concerned about another pregnancy. My lyme did not show up in any tests right before my first pregnancy so I thought I had gotten rid of it. Now I guess I should check everything again. But I do know that Lyme testing is pretty unreliable. How were you guys diagnosed?

[darlindeb25]

Ok Rachel--I can't have wine, it makes me very sick and I was told it is the sulfites in wine--is that the same sulfites as in corn?

[Rachel--24]

  darlindeb25 said:

Ok Rachel--I can't have wine, it makes me very sick and I was told it is the sulfites in wine--is that the same sulfites as in corn?

Deb.,

Sulfites are in most processed food so that includes all processed corn...especially corn syrup or corn starch. Sulfites arent in the fresh corn though....like corn on the cob. I cant eat the processed stuff but I do fine with popcorn that I pop myself or fresh organic corn (I'm sensitive to chemicals).

If you want to find out if its the sulfites you're reacting to...all dried fruits are very high in sulfites....especially dried apricots. I'm talking about the mainstream dried fruits mostly...some health stores have "unsulphered" dried fruits. Dried coconut is another one high in sulfites.

If its not the sulfites in the wine it could also be the yeast but my first guess would be sulfites.

[Rachel--24]

  Can said:

So what kind of treatment are you both going to have for Lyme?

I dont have a treatment plan yet as I've only just been diagnosed. My Dr. was wanting more tests done to see what else is going on besides the Lyme before he discussed any type of treatment. He wanted a full picture so to speak. They found out I also have candida, leaky gut, major food and chemical intolerances (but I already knew this) and a whole bunch of other stuff they wanna "fix" before they start going after the Lyme agressively. Right now I cant even take Vitamin C or most supplements and meds because I react to everything. They said I need to be able to take Vitamin C and magnesium in order to help my immune system fight the Lyme so they're gonna work on the intolerances first I think. Try to get me eating more things and taking vitamins....they are also working on detoxing my body before they start the Lyme treatment.

So thats where I'm at right now. Its all really new....I'm posting everything...tests, treatments, dr. appts...Its all on OMG thread. We're all kind of learning about this together.

[CantEvenEatRice]

  Rachel--24 said:

I dont have a treatment plan yet as I've only just been diagnosed. My Dr. was wanting more tests done to see what else is going on besides the Lyme before he discussed any type of treatment. He wanted a full picture so to speak. They found out I also have candida, leaky gut, major food and chemical intolerances (but I already knew this) and a whole bunch of other stuff they wanna "fix" before they start going after the Lyme agressively. Right now I cant even take Vitamin C or most supplements and meds because I react to everything. They said I need to be able to take Vitamin C and magnesium in order to help my immune system fight the Lyme so they're gonna work on the intolerances first I think. Try to get me eating more things and taking vitamins....they are also working on detoxing my body before they start the Lyme treatment.

So thats where I'm at right now. Its all really new....I'm posting everything...tests, treatments, dr. appts...Its all on OMG thread. We're all kind of learning about this together.

You sound like you have some really great doctors!