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      Frequently Asked Questions About Celiac Disease   04/24/2018

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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My son wants to travel with a small group from a church, across the country, the week of his high school graduation. They will fly out, spend 3 or 4 days in service projects in the Southwest, and then fly home, arriving the day before his graduation. He would pay for the trip.

I want to be fair, but I was exasperated. Their flight arrives around 9, after they pick up baggage and leave the Phoenix airport, they "will go grocery shopping" but they aren't sure where. The service work will be done -- probably-- at a native american reservation. They aren't sure. They are sleeping at a church. It will be in the 100's and obviously extremely sunny; my son takes meds that require him to limit his sun exposure to avoid serious complications. They don't know when the return flight leaves or when it gets in. He has to have a deposit in 2 weeks.

Apart from the vagueness, there are the 3 adults going. One of them has been very vocal in the past about students needing "unnecessary special treatment" and I can easily imagine her as one of those "oh, you can eat this" kind of people. But that's just my impression, founded in little fact and a lot of radar. This is not our church, it is the church that sponsors a great youth group that he attends with his girlfriend (who is also going).

So. What would you do? My husband is absolutely against it. I should add that the day AFTER graduation, the entire 100+ youth group goes every year to the beach for a week, for a retreat. He expects to attend that as well; I think at the very least it's an either/or proposition but I'm interested in others' input!

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It sounds like the gluten free issue is just the tip of the iceberg for this trip! In fact, that would be the least of my worries as most grocery stores, at least in large communities, have a gluten free aisle. And even if they didn't, there are gluten free options throughout the store, you just need to plan out what he would get. But the vagueness of everything would make me more nervous. Is it possible to have a sit down meeting with the person in charge of this trip to get all of your questions answered?? That is where I would start! Good luck.

My son wants to travel with a small group from a church, across the country, the week of his high school graduation. They will fly out, spend 3 or 4 days in service projects in the Southwest, and then fly home, arriving the day before his graduation. He would pay for the trip.

I want to be fair, but I was exasperated. Their flight arrives around 9, after they pick up baggage and leave the Phoenix airport, they "will go grocery shopping" but they aren't sure where. The service work will be done -- probably-- at a native american reservation. They aren't sure. They are sleeping at a church. It will be in the 100's and obviously extremely sunny; my son takes meds that require him to limit his sun exposure to avoid serious complications. They don't know when the return flight leaves or when it gets in. He has to have a deposit in 2 weeks.

Apart from the vagueness, there are the 3 adults going. One of them has been very vocal in the past about students needing "unnecessary special treatment" and I can easily imagine her as one of those "oh, you can eat this" kind of people. But that's just my impression, founded in little fact and a lot of radar. This is not our church, it is the church that sponsors a great youth group that he attends with his girlfriend (who is also going).

So. What would you do? My husband is absolutely against it. I should add that the day AFTER graduation, the entire 100+ youth group goes every year to the beach for a week, for a retreat. He expects to attend that as well; I think at the very least it's an either/or proposition but I'm interested in others' input!

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I have a senior as well and I agree with hubby. I would not be comfortable with the vagueness either. If the flight is already booked. then the info on the return flight should be made available . It's not like they booked an open ticket! If it isn't even your church why is there even an issue? Its all too wishy washy and I wouldn't trust my child's safety with these people. that's my 2 cents.

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Agree with the previous posters.

I have a 2 boys - a freshman in college & a sophmore in HS.

I probably wouldn't let mine go on either trip. I would have to know the people supervising. Or I would go, too. I can understand they may not know who they are going to help as that could change in a few months. Maybe look at what they did in the past?

I didn't let mine go on the "Senior Trip" at school because I didn't feel like it was supervised well at all. The parents that go, do thier own partying and some kid always kids in some sort of trouble.

I know this is a church group but....

Maybe you can get involved in the planning? Help them find a big grocery? Or Walmart? What are the food arrangements for the other kids? Are they all cooking thier own? Have a kitchen? Over a fire? A fridge?

He could certainly pack a jar of PB (checked luggage) and some plastic spoons. Packs of nuts. Stuff like that incase he can't eat.

As for the sun & heat.... I think you & he need a frank talk without Girl friend around about that. Falling out in front of her isn't impressive. They won't know what they are doing until they get there (maybe) so I would assume they will be working outside.

Is there something else you could get him involved in that week?

Remember, no matter what is decided, and even if he agrees its not a good idea, you are the reason he will tell everyone he can't go. Its our job as parents to be the "bad guy". ;)

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I live in AZ (lived in the Phoenix area, now Tucson). There are very few gluten-free options outside the major metro areas, unless you can cook with whole foods.

Also, it's beside the point if he has an issue with heat. This is heat x 2, on steroids with a grudge. You CAN NOT avoid the sun unless you are inside during the day. It reflects, it bounces around, and it is relentless.

If you let him come out here I'll email you my contact info if you need help (or if he needs emergency pull-out).

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The group itself is not the problem -- he's belonged to this youth group for 2 years, his friends are all part of it and our home church does not have a youth group. So I'm fine there, but the whole "pick up something to eat" part bugs me. I'm often overly cautious so I'm just checking! Seriously, how often do we go into a store and there's little to eat? For my kid with braces. Who may, or may not, have anyplace to cook. And if he does, we've no way to know if the utensils, etc.. are useable.

Even typing this, I'm thinking "no way..no way"

Ohyes to the mom as bad guy! Haven't we all been there?!

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Just for a different perspective (I'm not a mom), it's really possible to pack enough food for 3 or 4 days, and this might be a great opportunity for him to learn how to take care of his own food needs (sounds like he's old enough that that would be a good thing to know how to do, regardless of where he is). I travel a lot to obscure places without access to kitchens and manage to stay gluten, dairy and soy-free. It's a great skill to learn and this might help him start to learn it. He can always have his own back-up food in his suitcase just to be safe.

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The group itself is not the problem -- he's belonged to this youth group for 2 years, his friends are all part of it and our home church does not have a youth group. So I'm fine there, but the whole "pick up something to eat" part bugs me. I'm often overly cautious so I'm just checking! Seriously, how often do we go into a store and there's little to eat? For my kid with braces. Who may, or may not, have anyplace to cook. And if he does, we've no way to know if the utensils, etc.. are useable.

Even typing this, I'm thinking "no way..no way"

Ohyes to the mom as bad guy! Haven't we all been there?!

You're thinking of food, I get it.

But what your son needs to understand is that the locals (except those who are in the building trades) are INSIDE by the end of May during the day. We hear news reports daily that time of year about CareFlights for tourists stuck on the side of a mountain, or on a hike, dehydrated and burnt to a crisp.

You can't just land in the Sonoran Desert and work outside for 3-4 days without dehydration and sunburns. It takes more than a year to acclimate.

It's tough on a person who is ok in the sun. For someone who must limit sunlight it's impossible.

It's asinine to plan a trip out here that time of year, if the intent is to work outside (unless you're arriving acclimated from another desert). If they are working inside, that's another story (although I'd want to know if the place where they are working has a/c - if it's on a res it may not).

I've seen people of all ages and health ranges get heat stroke doing minimal work outside that time of year....it's bad. It even happens to locals who just aren't thinking...

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It's asinine to plan a trip out here that time of year, if the intent is to work outside (unless you're arriving acclimated from another desert). If they are working inside, that's another story (although I'd want to know if the place where they are working has a/c - if it's on a res it may not).

I've seen people of all ages and health ranges get heat stroke doing minimal work outside that time of year....it's bad. It even happens to locals who just aren't thinking...

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And BTW his best bet at a "regular" grocery store around Phoenix after 9 pm is a Fry's Marketplace (a BIG one).

They usually have a big natural foods section with lots of gluten-free options. Safeway has started labeling some foods as "gluten-free" with a sticker on the shelf underneath. Fry's does the same, just more of them.

I THINK Basha's has a new line of gluten-free products but I don't know if they're as common as Fry's or Safeway.

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He's almost 18. He's going to be making his own decisions before you know it. This is a chance for him to practice.

If you come at it from a "no way" perspective, thinking of all the risks, you can guarantee he won't learn the lessons he needs to learn from it and it will be a power struggle that drives you apart and makes him feel he needs to tough it out and keep it from you if he realizes he was wrong.

I'd wrap my head around the fact that this is something he wants to do and is capable of figuring out. Then I'd tell him that, and make sitting down with you or another informed, experienced person to think about potential problems and their solutions a requirement of going. I would require him to write up his plan and submit it to me for review before signing off on it.

If you see he's missed potential issues, you can make notes on the plan and ask him to address them before you can sign it. I bet he'll come up with more than you think.

His solutions don't have to be perfect. They have to account for potentials that could kill him or make him extremely ill. Life is full of risk. It's our job as parents to make sure our kids get a chance to take their own risks and learn to deal with their own emergencies and failures before they are truly on their own.

In the context of a youth group with some adults and access to transportation I think it's a good way to give him a chance to learn those lessons.

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As for food, he can bring or buy a camp stove and money for food, and he can pack some food in his luggage. Make sure he knows how to cook real food - vegetables, meats. He may be in a poor area, but hopefully they have access to vegetables and meats. That's about all our family eats and it is the healthiest food anyway. You could have him do some research on the availability of food in the area.

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Wait - this is for June? I think his plan needs to include researching weather patterns for the place he will be going.

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He's almost 18. He's going to be making his own decisions before you know it. This is a chance for him to practice.

Actually, he is 18 already. And already making decisions and managing his healthcare, with varied results and competency. I appreciate more than I can say that if we dropped dead tomorrow, he needs to be able to care for himself, by himself.

I'd wrap my head around the fact that this is something he wants to do and is capable of figuring out. Then I'd tell him that, and make sitting down with you or another informed, experienced person to think about potential problems and their solutions a requirement of going. I would require him to write up his plan and submit it to me for review before signing off on it.

That's how he went on the beach trip last year, doing exactly that. And the problem here is that there are many potential problems that are outside his control or mine to plan or sign off. (You do know that you sound pretty darn judgemental, right? We don't keep him locked in a closet :))

His solutions don't have to be perfect. They have to account for potentials that could kill him or make him extremely ill. Life is full of risk.

The potentials to kill him or make him extremely ill are present in the sunshine, and the reliability of a young man to wear spf bazillion sunscreen and stay out of the sunshine in Arizona when there is no one present but a bunch of friends and miles of desert. So I am simply weighing whether that is a risk worth taking, or not. I agree that a ship is not meant to stay at harbor.

In the context of a youth group with some adults and access to transportation I think it's a good way to give him a chance to learn those lessons.

Some adults who already are skeptical about the need for any "special treatment", and we don't know much about transportation, or where they will be or what they will be doing, or access to food. They admit that they will deal with that when they get there. Believe me, if this were a "we're staying HERE, working HERE, food provided HERE by THIS MEANS" I would be ready to let him go and swallow my worry. But those are answers that will not be provided until he is actually on site. We know where he is staying, but not where the day will be spent. "Hopefully" having access to whole foods is just not good enough, and asking him to live on food packed in his luggage and palatable in 105 weather -- because there's no guarantee there's any cooking facility, since they don't know where they'll be most of the day -- makes me unhappy. So I struggle along :)

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You and hubby will make yourselves sick (literally) with worry over this one. Maybe he and his girlfriend can make an alternative trip ? He'll have someone who cares about him traveling with him and they can take responsibility for plans, research, food requirements & shopping etc. As long as they go somewhere safe (in all respects) then perhaps you (and his girlfriends parents/guardians) can trust them to travel without other adults to supervise??

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I get that you have very valid reasons to be concerned about the trip and not want him to go. I am sorry that I may have given the impression that it seemed you hadn't raised him to be a competent person who could handle himself. That was not my intention or my perception.

From your original post, I had the impression that you were debating whether to "allow" him to take the trip or not. My post was a response to that... and aimed at giving you ideas for ways to make this squarely his decision while making sure he thoroughly looked at the issues for himself. It may be that if he really analyzed the situation he would come to the same conclusions you have about the trip.

It sounds like you have used the same techniques in the past, but this time your concerns are greater than before. I can see why you would be very concerned and contrary to your impression, I *don't* judge you for that.

I still think it's his decision to make, and the consequences of his decision are his to handle.

That's how he went on the beach trip last year, doing exactly that. And the problem here is that there are many potential problems that are outside his control or mine to plan or sign off. (You do know that you sound pretty darn judgemental, right? We don't keep him locked in a closet :))

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    • You could very well have celiac disease, but there are 200 symptoms attributed to celiac disease and those often overlap with other illnesses.  You could get tested, but all celiac testing requires you to be on a full gluten diet for 8 to 12 weeks prior to a blood draw (it can take time for antibodies to ramp up and spill into the bloodstream).    You have been off for a month and it is possible that you could have healed.   Consider getting back on gluten and get tested.  Since you have Gastritis, maybe you can get a GI referral and an endoscopy to biopsy the stomach and the small intestine.  Only two weeks on a gluten diet is required for that procedure.      Learn more about testing: http://www.cureceliacdisease.org/screening/  
    • I'm a 30 year old female. All of my life I've had extreme bloating after eating. About 4 years ago I started having upper stomach pain. It's dead center below my rib cage where the diaphragm is located. As the years have passed the pain became more intense and more frequent until it was daily and affecting my ability to function. I had 2 drs say it was gastritis but prilosec did nothing to help. My head got to where it always hurt and I was exhausted constantly. If the pain and head fog wasn't already enough my joints started to hurt and swell making it hard to get out of bed. I'm 4ft 11 inches and was 130 pounds and my blood pressure was staying 160/105. I've always suffered with spells of constipation then episodes of D. I was getting mouth sores and had random rashes and itching mostly on my legs. I've also suffered anemia. When my stomach pain is at its worst I have foul smelling stools. All my liver and pancreas testing have come back normal. I tested negative for h pylori but am currently on carafate for ulcers. I'm going for another gallbladder ultrasound in 3 days as 9 years ago the ultrasound showed sludge so the dr is wanting to recheck. I've done research for a while now on gluten and have cut it out for over a month. I have noticed a significant improvement since stopping it and only have flare ups if I accidently consume gluten. So my question is does this sound like anything you've experienced and been positive for celiac? I also have numbness and tingling in my feet and hands 
    • Welcome!   With a sister who has celiac disease, you are at a much higher risk of developing it.  I would go for the complete 12 weeks.  Why?  Because doctors recommend anywhere from six to 12 weeks for the blood tests, but there has not been many long term studies to back up the claims.  Best to play it safe.  It sounds like you are not suffering too much (I had no GI symptoms and just anemia when I was diagnosed).  Ask your PCP to run the full panel, including  the DGP and EMA tests.  Why?  Not all celiacs test positive to the TTG, like me!  If your Kaiser doc refuses, please ask if you can be referred to a GI and select one who handles celiac patients.  Some celiacs are even seronegative!  In that case, going to an endoscopy is necessary.  Keep in mind that you might just be developing it or know that if everything negative now, you can still develop it in the future.  First-degree relatives should get tested every few years even if there are no symptoms.   What if your PCP refuses even after you show him the printed data supporting your claims (and the ones I made...so hit Dr. Google)? Get to another PCP or put your request in writing  via the patient portal or a registered letter.  Be nice.  Support your claims.  Ask for the full panel or to be referred to a GI.  In writing, they have to respond.   I do know that the TTG catches most celiacs, but not all.  If celiac disease is still suspected, you should move to the next series of celiac tests.  Unfortunately, to keep costs down, Kaiser just orders the TTG for initial screening.  You have to get around that.  I found that out when family  went in for testing and they had Kaiser.   Advocate for your health!  Document!  Save and print all test results and maintain file.   Take care!  
    • hi All, I had been getting so gradually sick that I don't know when it started, (but I am now assuming 1994).  In 2008, I succumbed to pressure from my insurance rep to get more insurance, and they would even come to my house to test my blood.  I was denied insurance and recommended to see my doctor, who told me I had the liver of a severe alcoholic.  I very rarely drink. I went for tests and the doctor was baffled.  He said I should lose weight.  He said it was likely fatty liver disease. That was 2008.  For the next few years I got tests, tried to eat healthy, and every so often I would see if it was helping my liver numbers. I got stomach aches when I ate toast or a sandwich, but didnt link it to the toast except later, in hindsight.  How could toast give me a stomach ache?  Anyway, on the advice of my doctor, I tried very hard to lose weight, so went lo-carb.  One day, I had had no breakfast and at church 'goodie-time' was unable to resist all the carbs.  Later that afternoon, I felt like someone had literally poisoned me. This was now 2011.  I decided to not eat or drink anything but almonds and organic cold pressed  apple juice in a glass jar, and ate only those things for the next 3-4 days while I looked for symptoms on the Internet. I narrowed it down to celiac disease and went to the doctor.  I refused to eat gluten to get the test.  I decided not to eat gluten and I got better. I then started a job in China.  I learned how to say things like "no soy sauce" since it's made from wheat.  I got so much better.  I knew what my reactions were to gluten, especially the one that happened first: I would get a shakiness inside, like my blood system was micro-vibrating. i got the flu and was in bed for three days straight eating only mandarin oranges and water.  After a couple of days, I got that shakiness, suddenly, lying in bed.  I was astounded, cause I had only water and oranges.  Then I remembered that I had taken two Advil, in the gel cap form.  I looked on the Internet, and sure enough, the gel caps contained gluten.  Wow.  Even that small amount in two gel caps set it off. I was very vigilant.  Then one day, back in Canada, I was making hot dogs for a four-year-old and I had fresh bakery buns.  I couldn't resist.  I guess I thought, well, it's been a couple of years gluten free, let's see what happens.  I ate one and a half huge bakery hot dog buns on impulse.  Big mistake. I got so, so sick.  I was sick for 6 weeks with various symptoms.  Spleen pain, liver pain, kidney pain, migraine headaches, stomach issues, constipation, dizziness, brain fog, irritability, etc.  This was 2013. After one week of still being sick, I thought it's probably too late, but I should get that celiac test to see if there are detectable antibodies.  I went to the doctor, who didn't think it was necessary and insisted it was fatty liver disease and not celiac.  He humoured me and gave me the requisition anyway.  It wasn't too late!  One week later. i was shocked to see that my antibody level was 99. ( If you have less than 20 you don't have Celiac. It is called tTg test).  If you have 100, they say you don't really need a biopsy and it's pretty much confirmed celiac.  The doctor was a little bit embarrassed and said, "looks like you've diagnosed yourself". So finally he shut up about fatty liver disease.   I got so much better living in China.  I occasionally slipped. I  then went back to canada for a year.  I developed DH, as I got these lesions starting on my thumb and then on my fingers and palms.  Finally after 6 months I cut out dairy.  I had heard it was also somehow bad for Celiacs from the Internet but I really didn't want to cut out dairy as it was bad enough without gluten.  I finally did and the DH cleared up.   Then back to China.  I would go back to Canada twice a year for the time off from spring and summer holidays.  It was really hard to be around western food temptations and I would get "glutened" even though I tried hard. I began to get a strange pain in my leg and the doctor in canada said it was likely arthritis in my hip.  i went for an xray but it didnt show anything.  it really killed me to get that pain in my leg and then in my hip.  i would cry out and have to sit down.  i started riding my bike to work in china cause it was painful to walk very far.  I had started to reintroduce dairy while in China and found that I could eat yogurt, which I love. I had heard that people blamed their gluten reactions on Roundup, or glyphosate, because they could eat flour products in other countries but not North America.  One day about six months ago I made cookies for my students.  I wore gloves and was very careful.  Before this, I wouldn't even be in the same room with flour.  But nothing happened.  Then I tasted a cookie.  Nothing happened!!  The next day, I ate a whole cookie. Nothing happened!!  I began to think there was something to the theory of North America and roundup.  I still avoided flour in general cause I didn't want to push it, but I started eating soy sauce and relaxed a bit - started going to restaurants in china, etc. instead of micromanaging food in my kitchen, cause I was evidently not reacting to gluten in China.  I then realized that the only episodes of pain I had had were when I was in Canada the previous summer and spring.  Very strange.  So.  I got back to Canada, last spring, had my usual gluten free meal on the airplane, and then visited my mother.  I ate only organic yogurt.  Nothing else, and a few hours later I was attacked by almost every gluten related pain I had ever had.  My hip was suddenly shooting pain and I cried out and limped to the couch.  My mother asked, what did you eat?  I said, nothing!  Only organic yogurt!   Of course after any glutening, it takes weeks for these pains to subside, and I endured pain stabs in my spleen for a while.  Then back to China, where I was able to eat normally.  No pains, nothing.  I ate yogurt, made myself with uht milk imported from Germany or Australia, and I was fine.     Until the day when I ate one of the chocolate bars I had brought from Canada as prizes for my students.  Instant reaction! Spleen pain!  I had heard that sugar cane was as bad as flour for being drenched in roundup.  Now I was convinced. It was definitely stuff from Canada that was the culprit.  Only farm products.  Yes, they say the yogurt is organic, but I'm sure they feed the milk cows hay that has been exposed to roundup.   Now I know exactly what I can eat and where.  I love the food here, and it's safe.  There are exceptions.  They use pesticides on fruit, cause I get a stomach ache when I eat certain fruits, but it's a different reaction that the gluten reaction,  I can eat flour products without a huge reaction, but I still have celiac, because I do get reactions even from Chinese flour, just not as bad as I did before.  A mild sick feeling, like something is off, kind of unbalanced, and of course the inevitable shakiness.  I react much worse to Canadian chocolate.  But there is a huge difference between food here and food there.  A very painful difference.  Hard to figure out, but I think I have. so here's my theory,  roundup actually causes the celiac disease, or whatever disease you might happen to be genetically susceptible to. (My uncle has arthritis in his hip). If you keep ingesting it, you will get gradually sicker and sicker and get some kind of disease.  If you stop eating roundup completely, you will heal with a healthy diet.  If you already have a disease like celiac or DH you can manage it and stay healthy if you are totally roundup free. My dad died of nonHodgkins lymphoma and he insisted it was the roundup the neighbor had been spraying on his farm, right next to my dads organic hobby farm.  Now I believe him. I wish I'd been able to piece this together a bit earlier.  Since 1994, many diseases have hugely increased.  That's when they started with the roundup and there is a one on one correspondence on the graphs with roundup use and  many diseases. sorry for the novel but I just can't keep this all to myself,  I'm like the canary in the mine.  But roundup is everywhere so I don't know if you can really avoid it in North America, sadly. My advice is to move elsewhere and figure it out like I did. i saw a youtube video by an MIT researcher that they are now figuring out that glyphosate actually takes up the place of the essential amino acid glycine in your body.  Because they are molecularly similar, glyphosate gets in there and stops glycine from being able to do it's job in your body.  So it causes all sorts of problems in a gradual way and eventually you will have trouble. i hope this helps!  Stay away from farm products!  I hope it's not true what the conspiracy theorists say (that they are spraying chemicals, chemtrails etc.  I don't know if they are spraying roundup) but if it is, that's the end of the world as we know it.  I don't really want to go there,  I just know what I know and I'm sharing it.   this is just the short version  but I've tried to include important info.  Anyone else have a similar story in any way?
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