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Beware Of Soy!


ms-sillyak-screwed

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tarnalberry Community Regular
I have never heard of those studies. Interesting how these studies are not publically advertised. I'm hoping that Monsanto doen't continue to market those soybeans. Do you know?

Oh absolutely. The majority of soybeans on the market today in the US are roundup ready.

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Carriefaith Enthusiast
Oh absolutely. The majority of soybeans on the market today in the US are roundup ready.
Oh yeah... :blink:

I checked the soy milk that I drink once in a while, at least they are GMO free.

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ms-sillyak-screwed Enthusiast

Carriefaith -- What does GMO free mean?

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Carriefaith Enthusiast

Sorry :(

GMO = genetically modified organisms

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Felidae Enthusiast
I have never heard of those studies. Interesting how these studies are not publically advertised. I'm hoping that Monsanto doen't continue to market those soybeans. Do you know?

I have taken several veg, ecology, and botany courses and I have learned lots about the evils of Monsanto. It's not just the soybeans.

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Carriefaith Enthusiast
I have taken several veg, ecology, and botany courses and I have learned lots about the evils of Monsanto. It's not just the soybeans.
I learned about the potential dangers of GMO's in university and I found that you have to do a lot of research to find shocking information, like the information that Tiffany gave us on the soybeans.

I was thinking of the Russian research on Monsanto Roundup-Ready soy on rats cutting age at death in half when fed GMO soy-based diets instead of non-GMO soy-based diets. It appeared to actually be a decently designed study, enough so to warrant further study, though not actually draw real conclusions.
Tiffany, you don't happen to have a reference for that study?
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ms-sillyak-screwed Enthusiast

I'm not sure if this is what you are looking for but it doesn't look to good. I googled your words what I found were the first few link that appeared.

I found it here -- there is all sorts of information if you click the food link.

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Carriefaith Enthusiast

Thanks for those references.

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  • 2 weeks later...
ms-sillyak-screwed Enthusiast

I just picked up my new THYROID medication made by the compounding RX.

It was more then interesting that on the package insert it clearly stated DO NOT TAKE THYROID MEDICATION AND SOY, OR SOY PRODUCTS when on thyroid medication.

I feel better knowing I was right about SOY & THYROID connection I've been saying it all along. For many of you in DENIAL -- I know -- it is hard giving up so many things in our diet. And its hard going against the grain what Dr's tell us. But now I know where my secondary food allergies have come from and why I became so sick after 5 years gluten & dairy free. I wish all of you out in Celiac-land don't stay in denial about SOY because it will be a matter of time and you will get sick(er) from one thing or another. Just like I have, and so many others.

Forget what these money hungry doctors are telling you/us. Remember we are only 7 minute patients to them, a number and bi$$ the insurance company. We know more about what our bodies are telling us then them. SOY is in EVERYTHING! Veggie broth in tuna -- Walmart brand JELLO is packaged in the same factory plants lines that are processing SOY. Coffee has it in it. And if you don't believe me call Chase & Sanborn -- I did! And was shocked. Another way they hide it is they call it natural flavoring... Ha!

Well be well, and stay away from SOY...

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  • 3 weeks later...
evie Rookie

<_<

Like the brazil nut genetically modified soybeans.

:huh: Guess i am naive but has that cross been made? Carriefaith?

that really sounds disastrous!! evie

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eKatherine Rookie

The problem is that soy is just a food, which should be consumed in moderation, like any food. But the medical establishment has promoted it as something between a natural medicine and a miracle food that we should make the majority of our diet, based on nothing but test-tube studies. Population studies have failed to show that it has any amazing healing properties.

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ms-sillyak-screwed Enthusiast

"""QUOTE(Carriefaith @ Mar 29 2006, 10:17 AM)

Like the brazil nut genetically modified soybeans."""

Is this really true???

If this is a fact -- it explains why I get a reaction to BrazilNuts.

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ladyx Newbie

Well, I will tell you right now soy is the only thing that saved my life when I was a baby cause milk was killing me and so was my mom's breast milk...vegetarians live on alot of soy and live at least 7-14 years longer than meat eaters. lets not get all crazy about all foods being posion to all people...get tested if you must and find out what is bad for you but if you cut out too much stuff then you won't have enough vitamines in your system to ward off disease. You wouldn't believe how many foods are gmo there even trying to motify some plants with stuff form animals...great I want pig in my tomato's (We are veretarians if you hadn't figured that out by now)I use silk so no gmo's and only organic...I beleive that you do your best for your family...pray for God to bless the food and he makes up the difference...in this sinful world everything is killing us....including the air we breath..the water we drink ect. but we can't stop breathing or stop drinking or stop eating everything.

Hey some of you meat eatters have you ever thought that you may be getting trace amounts of things your allergic to in your meat or milk...if your allergic to corn what if they fed the chicken you just ate corn or I don't know that much about live stock feed but what ever that mix is they give them it could have gluten or maybe the antibotics they give when there sick or hormones to make them grow faster...what ever does anyone know if it has gluten in it?

And about soy and thyroid meds...I don't know but my dad has really bad hyperthyroid that he regulates with vitamains and herbs...no meds needed anymore...he was on meds at first till he found the right ballance of vitamins and herbs that worked for him. then he weaned himself of the meds. The doctor had told him he couldn't get better and they wanted to burn out the rest of his thyroid and put him on meds the rest of his life...but he is very healthy now and acctually a bitt over weight right now...(not very common in those diagnosed with hyperthyroid) He uses soy a lot also because he is a vegetarian...did you ever think it might be the meds that are bad for you and not the soy...just a thought...by the way it is not the doctors that are out to get you it's the drug companies who brain wash them into thinking there miricle drugs are better then all the natural things God gave us.

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Laura Apprentice

After reading all the comments in this thread at once, this is my take: The medical verdict is not yet in on soy. It seems to benefit some conditions and worsen others. It shouldn't be, as ekatherine said, treated as "something between a natural medicine and a miracle food that we should make the majority of our diet." But neither should we become hysterical about it because some people have negative effects from it.

That said, any time something is used constantly as a filler or stabilizer in processed foods, it can become an unseen problem. True of wheat, soy, corn. And we're all better off avoiding processed foods anyway. Finally, GMO=bad news.

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ladyx Newbie
After reading all the comments in this thread at once, this is my take: The medical verdict is not yet in on soy. It seems to benefit some conditions and worsen others. It shouldn't be, as ekatherine said, treated as "something between a natural medicine and a miracle food that we should make the majority of our diet." But neither should we become hysterical about it because some people have negative effects from it.

That said, any time something is used constantly as a filler or stabilizer in processed foods, it can become an unseen problem. True of wheat, soy, corn. And we're all better off avoiding processed foods anyway. Finally, GMO=bad news.

summed up very nicely wish I were that elequant .............ha I can't even spell it lol.

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Lillyth Explorer
I want to share will all my Celiac cyberspace friends what I found out about SOY. I thought I was getting better gluten & dairy free and replaced SOY as a major part of my diet. After almost 5 years of living gluten & dairy free I developed major THYROID problems I believe are from SOY. It is my opinion... but read for yourself and draw your own conclusions.

I welcome others throughts and views on this so we all can understand this better.

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Oh damn. This is one of those things I wish I had never seen. I mean, NEVER.

I went straight to Dr. Mercola's site, as I trust his opinions & findings - I fed my son soy formula (after he stopped breastfeeding - or more accuratly, after he continually tried to take his meals from me "to go", otherwise known as biting). I specifically kept him off of cow's milk formula, for a miriad of reasons. Now I'm worried. WHAT non-reversable effects?

Have you read the book? Can you tell me? Isn't ANYTHING safe for our kids?

AAAAAAAAAAaaaaaaaaaaaaaaaaaaaaaaaaaaaaack!

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ms-sillyak-screwed Enthusiast

I would rather err on the safe side and avoid it.

I wish someone posted the problem with soy before when I first came down with celiac disease. I have been very strick what goes in my mouth I NEVER cheated on a gluten & dairy free diet for 5 years. But I ate plenty of SOY. It's in everthing. Tuna (listed as veggie broth) chocolate bars (soy lethien sp), it's in beauty supplies, gum, the list is endless... They can hide it in labeling as, veggie broth, natural flavoring, flavoring and on and on.

And for those of you still in denial. Why would SOY be listed in the 8 major food allergens?

For those who still don't believe... go buy a few books or you can find them at your local library.

The Thyroid Connection -- Living Well with Autoimmune Disease: What Your Doctor Doesn't Tell You...That You Need to Know -- Dangerous Grains -- Paleo Diet -- (if you would like me to list more I will.) Read some of these book and read what the authors are saying about SOY and you will quickly change your mind.

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Carriefaith Enthusiast
Is this really true???

If this is a fact -- it explains why I get a reaction to BrazilNuts.

In that case, they put part of brasil nuts in soy beans, so people with allergies to brasil nuts were getting reactions from eating the soybeans.
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ms-sillyak-screwed Enthusiast

HERE IS AN ARTICLE THAT JUST APPEARED IN THE FORT LAUDERDALE NEWSPAPER

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Fab bean or has-been?

The legume is healthful but, scientists say, it's no magic bean. Too much, some add, might pose risks.

By Hilary E. MacGregor

Times Staff Writer

May 8, 2006

WHEN soy burst onto the Western food scene in the early 1990s, the possibilities for the bean seemed boundless. The protein-packed legume had potential to prevent breast cancer, increase bone mass, alleviate hot flashes. It seemed to lower cholesterol, and thus to help prevent heart disease.

Millions of dollars were poured into research, and technologists plopped soy into every food imaginable. They ground it into burgers, hot dogs and sausages (Tofurky was born). They processed it into cheese, milk and ice cream. Manufacturers added it to baby formula, and baristas foamed it into lattes.

Purists consumed soy in its traditional Asian forms — as tofu, tempeh or edamame — while hard-core health nuts sought out soy protein powder or isoflavone-packed supplements.

But 15 years later, with ever more soy products available in the grocery store and conspicuous soy consumption a cultural shorthand for "Hey, I'm health-conscious!", the tides are turning against the Asian wonder food.

Call it the "soy backlash."

A crop of books and articles are now warning about the dangers, not benefits, of the bean.

Soy now has its very own tell-all, penned by a certified nutritionist: "The Whole Soy Story: The Dark Side of America's Favorite Health Food."

It's being tracked by an international watchdog group, the Soy Online Service, whose mission is to "uncover the truth about soy" and inform consumers about "the plethora of criminal and dangerous lies that issue from the soy industry."

Soy, we are warned, can do terrible things should we overdose on tofu or soysauge, suggests the men's magazine, Best Life: "Grow man boobs! Shed muscle tone! Boost estrogen! Saps your sex drive!"

These reactions are extremes. But even mainstream scientists are pulling back on once-heady health predictions for the bean. New research is showing that soy is not the magic bullet researchers once hoped it might be.

Yet these scientists also see soy's fall from grace as the latest casualty in Americans' endless — and unrealistic — search for a single substance that can change your life.

"It's just food!" says soy guru Mark Messina, an adjunct professor of nutrition at Loma Linda University in California, who has written books on its health effects and consults for the soy industry. "We are talking about diet here. Not the fountain of youth."

The vegetable in the hairy pod is a pretty complicated bean. Native to China and Japan, it is termed the "king of legumes" because it has the most complete protein of any member of the pea family. It is high in calcium, magnesium and vitamin B, and contains estrogen-like chemicals — isoflavones.

Soy has had its share of celebrity champions. Henry Ford was batty for the bean. He created a car made out of plastic from soybeans, wore a soybean suit and soy fiber tie at various public functions, and served a 15-item soy menu at the 1934 World's Fair.

But it was in the 1990s that evidence of soy's possible benefits began to mount (see sidebar) and books and magazines took the science and ran with it. "Are soy isoflavones the women's health powerhouse?" asked a 1997 article in the newsletter the Nutrition Reporter, adding that soybeans might end up "the ultimate women's health supplement of the 21st century."

The market for soy foods exploded.

Over the last 10 years, the average growth rate of soy products has been about 14% a year, says Peter Golbitz, president of Soyatech, a soy industry information company. Even now, he says, soy sales continue to grow, albeit less briskly. "We have been selling to baby boomers and hippies for the past 20 years," he says. "Now it is time to embrace the changing demographic of the American consumer."

That, he said, includes Latinos, Gen X-ers and Y-ers.

Perhaps no food could withstand the hype heaped on soy. But with more rigorous scientific examination, the bean's starry promise seems to be crumbling.

In January, the American Heart Assn. published an advisory pulling back on its earlier, 2000 stance on soy, which had recommended "including soy protein foods in a diet low in saturated fat and cholesterol." January's statement said that a review of 22 studies showed that soy protein with isoflavones did not, after all, seem to improve cholesterol. Thus, the association said, it "could not recommend the use of isoflavone supplements in pills or food for the prevention of heart disease."

Alice Lichtenstein, a nutrition scientist at Tufts University and the chair of the heart association's nutrition committee, says the scientific cart simply got ahead of the horse.

"Soy is good," she says. "Soy as a food is very good" — but only because it has healthier fats and vitamins than, say, meat. If you eat a soy burger, you are not eating a hamburger. If you are eating a tofu pup, you are not eating a hot dog.

This April, there was more bad news for soy. Although many women consume soy or soy supplements in the hope of preventing breast cancer, a study in the Journal of the National Cancer Institute found differently.

After analyzing 18 studies, the authors concluded that eating soy may very slightly reduce the risk of breast cancer — but not enough to recommend soy foods or supplements.

For breast cancer survivors, taking soy supplements (as opposed to food) could actually be ill-advised, says study coauthor Robert Clarke, a professor at Georgetown University's Lombardi Comprehensive Cancer Center.

Unlike soy foods, supplements contain high levels of estrogen-like isoflavones, such as one called genistein. And estrogens coax breast tumor cells to divide, says coauthor Leena Hilakivi-Clarke, a professor of oncology at Georgetown.

The hot flash connection has also begun to erode. In early trials, soy isoflavones reduced hot flashes by 9% to 40% in menopausal women, but most of the 25 or so trials done later showed no difference from placebos.

More than soy's effectiveness is now under scrutiny: A few scientists are actually voicing fears about its safety.

Some worry that soy may affect thyroid function, and even interfere with the absorption of synthetic thyroid hormones. (However, a March review of 14 trials found that neither soy protein nor isoflavones adversely affect the gland.)

Others are worried about reproductive problems. Last year, researchers at the National Institute of Environmental Health Sciences found that mice given genistein right after birth developed irregular menstrual cycles and problems with ovulation and fertility. This year, they reported that genistein disrupted the development of ovaries.

"Whether these things cause problems in humans, we just don't know," says Wendy Jefferson, an NIEHS scientist and the paper's lead researcher. "But so many babies are on soy formulas. If these things are going to be a problem … it is a problem that would only manifest later, when a woman was trying to get pregnant, or having reproductive cycle problems."

The research led an independent panel of 14 scientists to meet in March and decide whether soy formula — fed to an estimated 10% to 20% of U.S. infants — is hazardous to human development or reproduction.

The panel concluded that soy formula was safe but the one pediatrician on the panel expressed concerns. Dr. Ruth Etzel, who works at the Alaska Native Medical Center in Anchorage, says exposure to soy formula occurs during a critical time in infancy and might possibly affect development of the brain and reproductive system.

Yet even as some soy fears grow and much of its promise is being shot down, new possibilities are popping up.

A recent study suggested that if women consume soy during the third trimester of pregnancy, it could help program fetuses with a craving for healthful foods and a good metabolism.

Others suggest that when women eat soy could be key. Research by Anna Wu, professor of preventive medicine at USC, suggests that girls who eat a lot of soy during adolescence — when their breasts are developing — may be less likely to get breast cancer later.

And bone strength may be one place where soy really delivers. A three-year, $3.4-million study funded by the National Institutes of Health is testing whether soy isoflavone supplements can help preserve bone in the lower part of the lumbar spine in post-menopausal women.

Nutritionists watch the very public taking down of soy with bemusement — and slight exasperation. Many point out that meta-analyses (which pool results of different studies together) are not the best way to determine a food or medicine's effectiveness — especially in the case of soy because the product comes in so many forms.

But they also see the fall of soy as part of the cycle of American pop culture, be it celebrity or bean: hoist it up to impossible heights, then drag it down and bash it. The truth about soy, they say, is somewhere in the middle.

"Soy is eaten by two-thirds of the world's population." says Dr. David Heber, director of the UCLA Center for Human Nutrition — apparently quite safely. If anything is problematic, nutritionists say, it is the quintessentially American habit of assuming that if a little of something is good, then a lot must be really good. Eat soy as a food, they add. It would be nearly impossible to overdose from eating too much tofu, tempeh or soy burger.

And be realistic.

"If a drug company came up and said 'We are going to develop a product that reduces the risk of heart disease, reduces the rate of prostate cancer, that alleviates hot flashes and does good things for bone, and that doesn't have any side effects,' they would be laughed out of the room," says Dr. Gregory Burke, a professor in the department of Health Sciences at the Wake Forest University School of Medicine.

But just because soy is not a magic cure for hot flashes and breast cancer does not mean it isn't a good food.

"It should be thought of in the same way that people think of exercising, not smoking and a prudent diet," Burke says. "It is not to be overdone, and not to be said it is worthless."

Soy's medical side

The idea that soy could help with chronic diseases, especially women's diseases, came from comparisons of Asia to the West. Rates of breast cancer, heart disease and endometrial cancer were known to be much lower in countries such as Japan, where soy foods like tofu are frequently eaten.

It is hard to boil vast cultural differences down to a few foods, but scientists tried to adjust for other lifestyle differences and found that after they'd done that, eating soy still appeared protective.

The data were intriguing enough that in 1991 the National Cancer Institute made millions of dollars available for soy research.

In 1995, the New England Journal of Medicine published an analysis of 38 clinical trials that found eating an average of 47 grams of soy daily reduced bad (LDL) cholesterol by 12.9% — the same effect as modernday statins, and with no apparent side effects.

"To find a food that lowered cholesterol 13% was phenomenal," says soy scientist Mark Messina.

In 1999, the Food and Drug Administration granted a health claim for soy: Foods with 6.25 grams of soy protein a serving (and which were also low in fat, cholesterol and sodium) could bear a label declaring that the protein might lower heart disease risk.

Right around that time, women's health was gaining attention and boomers were hitting menopause. Hot flashes became the topic du jour. Soy, again, took center stage.

Scientists hypothesized that soy's so-called phytoestrogens might be why Japanese women's rate of hot flashes is one-third that of Americans. Early research supported that notion.

Studies have also shown that Asians who eat soy have higher bone density than Asians who don't; animal studies suggest that both soy and soy isoflavones can keep bones dense.

Small, clinical trials are encouraging: A study published in the American Journal of Clinical Nutrition in 2000 reported that perimenopausal women who took 80 milligrams of soy protein powder with isoflavones daily over six months did not lose any bone mass in their lumbar spine region.

A control group who took whey protein lost a small but significant amount of bone (1.3%).

— Hilary E. MacGregor

Copyright © 2006, The Los Angeles Times

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key Contributor

I think it is crazy to attack one food group like soy and think it is that bad! It is just crazy to me. LIke someone said, I don't think it is a miracle cure and should be consumed in massive amounts, but if you want to know the truth, there are lots of negatives for meat eating (like getting your food second hand). There just hasn't been that much soy eaten by americans to know what side effects it has. My brothers both grew up on soy and they don't have boobs or thyroid problems and they are in there late thirties. I couldn't tolerate soy as a baby and had some form of evaporated milk. I think if we eat massive amounts of anything in our society it probably isn't good for us. Probably why Celiac is on the rise. I think though, being obsessed with soy being bad for you is just nuts! Don't get so hung up on one food group being bad for you. THere is just as much research and negative affects from excess dairy products and other things.

It definitely isn't good for you if you are allergic to it or have an intolerance to it, but many people enjoy soy without problems at all!

Monica

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ladyx Newbie

I could send you all kinds of articles and websites on how the hormones in meat and dairy could be making girls hit puberity sooner and get bigger boobs...ect. I personally know someone who worked for the dairy industry and inspected dairy farms. He will never use dairy again. He told me that your wonderful Grade A milk is just the milk they can't do anything else with. It has to many hormones and antibotics from the cows in it to curdle and be able to make into cheese or cottage cheese. There is a lot of other gross things I could tell you about milk and meat but my point is that because of tecnology almost all foods have been contaminted with pestisides, gmo, antibotics, or hormones. Anyway seems like the best way to go is organic...also seems like if you think soy is bad and we know milk is bad...guess you have to pick the least of two evils...unless of course you have an alergie...we all do the best we can for our family so please stop trying to make everyone else be a soy hater.

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penguin Community Regular

Here's a well-researched article on milk: Open Original Shared Link

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key Contributor

Why do you consider this to be such a well researched article. Of course they want you to think that milk is ok. There are some things that we just don't know it seems. I prefer my organic milk personally. NOw there will be a big discussion about milk. You can find basically any research article you want that will lean towards whatever side they want you to believe. There are SO many issues out there that we really don't know.

Pharmaceutical industry

Aspartame,

Dairy,

Meat,

Soy,

Flouride,

Microwaves,

cell phones,

water,

vaccinations

Just pick a topic and open a can of worms with somebody out there!!

Don't believe everything you read and try and do what is best for you and your family!! That is what I do.

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manxasthehills Newbie
Thanks CARRIE for confusing the issue.

Don't listen to doctors... they want us to be sick -- thats how they make $$$$$.

Listen to your body and get well!

YOU and other will see in time SOY IS POISON! just like I did. But by that ime it will be too late.

Our government and food companies make billions, no zillions of dollars producing SOY. They aren't going to stop and say, "OH SOY IS POISON!" they are making billion on us. Stop for a minute and really think about it.

I find an interesting connection with Pres Bush, he and his entire family have thyroid problems. BUSH signed the food labeling law so we all know what we are eating. Also I find it also interesting that the White House fired/change the cook and replaced it with someone new.

Cape -- you are right. Beans are in the legume family = soy.

Hi, my son is celiac, and he has been told to avoid Soy, because we were told it contains gluten. luckily in the U.K it isn't in as many foods as it seems to be in th U.S

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key Contributor

Soy here does not generally contain gluten, so no need to avoid it because of that here.

Monica

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      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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