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Can Anyone Help Me With More Sites?


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#16 Rachel--24

 
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Posted 22 October 2006 - 08:29 PM

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


No...it certainly does not. :angry:
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#17 diamondheart

 
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Posted 22 October 2006 - 08:40 PM

Hi Deb,

Here are some references for you. The first is a Chinese medicine approach to Leaky Gut Syndrome. 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: Selective IgA Deficiency

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

"Intestinal Parasites, Bacterial Dysbiosis, and Leaky Gut"
"Leaky Gut Syndromes: Breaking the Vicious Cycle"

Here's a little more in depth on intestinal dysbiosis, caused by Candida or bacteria:
"Intestinal Dysbiosis and the Causes of Disease"

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

Claire
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#18 darlindeb25

 
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Posted 23 October 2006 - 01:11 AM

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
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#19 Simply_V

 
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Posted 23 October 2006 - 02:00 AM

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 http://www.cornaller...lergen-list.php 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.
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V
Severe airborne allergies since childhood. Was on constant antihisamines with behavior issues. Digestion issues started noticably around 1985.
1992 IBS diagnosis.
2004 Corn allergy - through diet discovery.
2005 RAST negative to all food allergies. High cholesterol diagnosed as PCOS.
2006 Immunolabs ELISA and IgE assay:
IgE to Corn, Milk, Eggs, & White Bean.
IgG to peppers, blk/wt pepper, beans, almonds, yeasts.
Neg. to Celiac, gluten, etc. High IgA level.
2008 No longer considered as having PCOS, or associated risks.

Currently avoiding corn, eggs, cow & goat milk, all beans (cept some soy derivatives & peanut oil), cruciferous veggies, onions/garlic, carrots/celery, anything bilberry/cranberry/blueberry, peppers, and anything remotely corn derived, corntaminated.

Currently off all allergy medications for airborne allergies and breathing fine.

#20 mouse

 
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Posted 23 October 2006 - 08:06 AM

Thank you V. I will take them back the next time we go there.
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"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004
Allergies - corn, soy, casein, egg whites and wheat
Morphia Scleroderma
Osteoarthritis
Hypothyroid and Hperthyroid
Essential Tremors
Asthma
Migraines
Fibromyalgia - diag. in 1978 when they called it Fibrositis
PAD Peripheral Artery Disease
Angina and Atrial Fibrillation
Gluten Ataxia
Vitiligo
Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.
Ocular Myastenia Gravis

#21 Can'tEvenEatRice!

 
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Posted 23 October 2006 - 08:21 AM

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?
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#22 darlindeb25

 
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Posted 23 October 2006 - 08:22 AM

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?
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#23 Rachel--24

 
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Posted 23 October 2006 - 09:10 AM

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.
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#24 Rachel--24

 
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Posted 23 October 2006 - 09:20 AM

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.
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#25 Can'tEvenEatRice!

 
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Posted 23 October 2006 - 09:30 AM

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!
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#26 Rachel--24

 
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Posted 23 October 2006 - 09:35 AM

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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#27 darlindeb25

 
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Posted 23 October 2006 - 02:37 PM

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.
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#28 Can'tEvenEatRice!

 
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Posted 23 October 2006 - 03:03 PM

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?!
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#29 Rachel--24

 
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Posted 23 October 2006 - 03:19 PM

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.
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#30 diamondheart

 
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Posted 23 October 2006 - 03:51 PM

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
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