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Cal Gal Trudy from old time Gerd friend - news from the gut
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LynnRMos posted:
Hi, Cal Gal and Trudy - I couldn't complete this message on my iPad had to go to laptop.

Here is the news. If you remember, we corresponded re my having exteme chest pain, breathing difficulty etc after gall bladder surgery. All docs (multiple testing) mostly gastro but some pulmonary and cardiac as well - labeled me neurotic and/or ppi worthy. Many expensive and painful tests proved nothing.

So finally, lactose intolerance was discovered and I went dairy free. Except one day I tried my daughter's Lactaid. Twelve hrs later I was flooding out with diarrhea. I went back to check the food intolerance results and sure enough casein, egg whites and eggs yolks were in the high moderate range.

The short of it is I have Gerd. Oh yes! Only when I eat milk sugar - lactose, casein milk protein, eggs. The casein sets up an allergic reaction that mimics lactose - bloating, diarrhea, chest pain. I have had QRS low voltage in the left ventrical since this all began and I will swear it is a result of the inflammatory process from my gut.

It took three yrs to reach this level of education about my body. The medical community did not encourage me to seek a food intolerance test. So therefore, I implore everyone on this board who complains of all these mystery symptoms to get food intolerance ruled out. That includes antegens for celiac disease as well. It is only a blood test. The blood is sent off to the lab and the lab reports back the results.

I had so many mystery symptoms - didn't leave the house - thought about suicide - almost destroyed my marriage. It took six months of abstinance from the substances my body can't tolerate before I began to feel better. However, unless I screw up and eat the wrong thing - I do feel better.

One caveat I learned this wk. I had considered myself ok because I was off the lactose - then the illness with Lactaid. Researching the web I learn that casein is used as an emulsifier in processed foods under many different labels. Eggs as well. So, I am only half way through recovery.

My son, G-d help us was diagnosed with lactose intolerance a few yrs ago continued to have diarrhea. When I researched the genetic aspect of casein allergy his eczema, so called seasonal allergies, and most upsetting of all two instances of anaphylactic shock all fell into place. He is finally getting tested this wk. He couldn't understand why he still had diarrhea lactose free. He never had Gerd.

I had to find an internist who believed in alternative medicine. Alternative is the operant word. It doesn't mean weird diets or sham practices. They just think outside the ppi box and are willing to test for conditions that won't necessarily make the pharmaceutical companies wealthy.

So once again, thank you for helping steer me in the right direction when I thought I was losing my mind. Gerd is real - some people have true Gerd and lifetstyle changes will help. Others have underlying causes that make Gerd secondary to the real deal. I have never found a dr. who wasn't an alternative medicine practitioner who did anything other than give me a ppi and imply I was neurotic so please go away. Thanks again - my life is almost turned around.
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CalGal37 responded:
Lynn, it's GREAT to hear from you and know that you're doing better! As you may remember, my husband has to be gluten-free, but he also cross-reacts to casein. So we're constantly reading labels and calling or E-mailing manufacturers.

I know what you mean about food problems and docs not being familiar with the problems! I'm fortunate in that I'm associated with a couple of docs who routinely test for food issues. Most of their patients may start out by thinking the docs are nuts, but you wouldn't believe the amount of people we've been able to help after finding out avoiding certain foods should be avoided. We've got 'die-hard' patients that gladly talk to others to help convince them that changing their diet isn't the worst thing in the world. And there are many individuals who, once I get my hands on them and work with them for awhile, I end up saying 'would you please consider getting some food testing done? I'd make you a bet that you're 'x' intolerant.'

And yes, as my husband and some of the patients I work with have found out, it CAN and does take time to find out what is going wrong and then take more time to 'clear' the damage (as much as possible) years of being 'poisoned' has done. It's not easy. I see my husband battle it every day.

I'm SO GLAD you're feeling better and SO DAMN happy to know you've got some answers. Congratulations on being persistent!

Please don't be a stranger. Come back and help others, would you? Trudy and I can pound, and pound, and pound talking about getting tested and being persistent, but you are a very 'recent' example with a very vivid story. You may be able to help others in ways that we can't reach them. I wish WebMD would prominently take your post and feature it! It's something others need to hear!
 
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TrudyGERD replied to CalGal37's response:
I'm so glad CalGal let me know to come check this out. I've been away from the boards for a while now and shamefully haven't even checked my email (sorry CalGal) so I didn't see this until now. I'm SOOOO glad to hear how well you're doing and that you've finally figured things out. Just watch, you'll be preaching to everybody you know who has a health issue to get checked for food allergies and intollerances and to investigate legitimate alternative medical approaches. Don't you just hate how people take alternative to mean wacky, insane, unproven things? I don't see how elimination diets are alternative but unfortunately, if it's not a fix involving pharmacuticals (which do have their place and benefits) then it's not mainstream. Way to go for taking control of your life and health!!!!

Isn't it scary just how foods can affect you? Victoria's autism is even affected by her food intollerances. Natalie gets bladder problems with some of hers. Too many doctors just don't get it. I'm blessed to have been able to find doctors who really do understand all of this (it took time to seek them out) but now my kids' health has improved so much.
 
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Annie_WebMD_Staff replied to TrudyGERD's response:
Hi TrudyGERD,

It's nice to see you here! It's been a long time and everyone has missed you!

- Annie
 
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Louise_WebMD_Staff replied to TrudyGERD's response:
Trudy,
Good to hear that your girls are doing better.

Even better to see you. I have missed you TONS. Every time I see a celiac or gluten intolerance question or questions about diet in general--I think of you.

~Louise
 
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Cancerprevention123 replied to Louise_WebMD_Staff's response:
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Fortunately--he was determined and so was his doctor to heal him.He promised if healed-he would try to help others.He approached his doctor for financial support-.His doctor felt that this will boost his morale--medicine and physical therapy had improved his health 90%--but morale raised it to 99%. Please read the stories on:
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CalGal37 responded:
Hi Lynn!!!! It's so good to hear from you!

You are so damn right about the food issues. There are physicians now who specialize in Functional Medicine and do this type of testing. SO I'd also like to encourage everyone to consider checking out this form of diagnosis and treatment. A drawback is some of the tests aren't covered by some insurance firms, but when you figure out what's going on and 'get your life back,' the cost is more than worth it.

In people with celiac, a heck of a lot cross-react to casein. Whenever I run into a celiac person I try to remember to mention about checking out casein. Unless I'm mistaken it's an IgA mediated reaction, and it's auto-immune. So conversely, if I hear 'casein,' I try to encourage checking out gluten via a fecal antibody test - in my eyes more sensitive than biopsy or blood test. Lynn, I since you mentioned only the blood test for gluten, please consider giving the fecal antibody test a try - check out enterolab.com.

Many, many, many with 'GERD-like' symptoms (and pulmonay issues) are actually reacting and presenting with those symptoms due to gluten........okay, I'll get off my soapbox now.

I'm so, so glad you posted!!!! I hope many other will learn from your first-hand experience.............

Please keep in touch!


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