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Just got glutened

Started 1361372215.353 in Health & Fitness | Last reply 1361844710.09 by livehealthy

Over the weekend I got some turkey lunch meat that I thought was safe to eat, but what followed were stomach cramps, time in the bathroom (painful), severe insomnia, terrible fatigue to the point of stumbling and loss of balance, and -- this always happens about 48 hours after consumption -- losing my temper over something trivial.

The reason for these problems is gluten. I've been gluten free for three years now, and felt a dramatic increase in energy, better mental focus and more smooth moods from the first month I went off. I got a celiac blood test before discontinuing, and did not realize the one my doctor chose for me is only 50 percent accurate, so while the test was negative I may have celiac. (Once you are gluten free there is no test except for a genetic test.) If it's not that, it's some kind of immune mediated response. I know this because from time to time I forget to read a label and buy something containing that particular critter, and the reaction is quite marked. What makes it more difficult is that gluten comes disguised under a food additive that can by one of dozens of names that sound perfectly innocent and nothing like wheat. Shelf tags in supermarkets help but the best way to know is from the manufacturer directly.

Thank goodness this recent episode is almost over -- I still feel some residual muscle weakness and lethargy. And now I have the privilege of buying more expensive gluten-free lunch meat, to go with the higher priced gluten free bread etc.

Years before this discovery about how gluten affects me, I was dx'd with fibromyalgia lupus and raynaud's (may have sjogrens too, dry eyes & mouth just never tested). The symptoms related to gluten consumption go back to childhood, so I believe that the poor absorption of nutrients arising from gluten intolerance likely was a factor in developing the other illnesses.

I share all this, well partly because I like to talk {#emotions_dlg.lol} and partly to let people be aware that if you or a loved one has an autoimmune illness, food allergies, weight fluctuations, or chronic headache, joint or other pain -- or exhibits any symptoms of celiac disease, it's worth it to get tested (there are more accurate blood tests). It might even be a good idea to go off gluten for a month, see how you feel, then try it again to determine if there is a reaction. That is the only real way to know if any specific food not right for you. However it is not enough to "cut back," it's an all-or-nothing proposition. A good book on the subject of how re-engineered wheat can affect our bodies is "Wheat Belly," which I got from my local library. But if you don't want to read a book, google celiac or gluten, there is plenty of free information on the web.

I'm appalled, appalled to find that sanctimony is going on here.

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Paperdolly1361374790.4831207 PostsRegistered 3/13/2010Wisconsin
I'm so sorry that you got a bad reaction, Buttercups. I've walked a mile in your moccasins! After being gluten free for a while, any gluten seems to have a bigger reaction, doesn't it? My doctor is a colleague of Dr. William Davis, the author of Wheat Belly. He is a firm believer -- as am I -- that the root of all diseases is caused by food. There is more and more research now being published on gluten causing autoimmune diseases. And, usually when a person has one, they will automatically get another and another if they continue to eat gluten. I have Hashimoto's and Sjogrens. My sister has Hashimoto's, Sjogrens and RA. (She's in the medical field and doesn't believe any of this and has aged beyond her years as a result.) I hope you feel better soon! Take a probiotic (if you don't already) and drink plenty of water to flush the gluten toxins out.

Proud volunteer for the Wisconsin Adopt A Golden Retriever Rescue and momma to Lucy, Striker, Sophie, Lilly & Ransom

Violet Eyes1361374940.8673438 PostsRegistered 11/9/2012

My son is entirely gluten free because he tests Celiac. Myself, I am trying to go gluten free because I notice my Type 1 diabetes (autoimmune) improves when I avoid it. It also helps a lot with arthritis....it seems to help with inflammation to avoid it. Some think of it as a fad...personally, I think it is anything but.

I, too, enjoyed the book "Wheat Belly". It was an interesting read.

Here is hoping that you are feeling a lot better today!

autumnfaire1361376883.0334955 PostsRegistered 8/1/2005

I'm glad that a gluten free diet has helped you so much. I think it gets a bad rap because some people who don't have any symptoms claim they are gluten intolerant. We have a relative who never stops talking about it and makes us eat gluten free when when we visit. I believe that food allergies are real, but with people like him, I just roll my eyes.

The Bird1361377373.391809 PostsRegistered 3/17/2007

Thank you for your post and I too wish you to feel back to normal soon! Between what I've learned from Wheat Belly and the documentary Genetic Roulette, which deals with gmo's and leaky gut which can theoretically lead to all kinds of allergies (incl celiac), autism and auto immune diseases, I would like to know someday just exactly what it is that makes me sick. Is it the wheat, the gluten, the gmo's with BT now living in the gut, or a combination?

DH accidentally ate candy with wheat last weekend and ended up with a flare of arthritis pain, headache, lethargy and mental dullness. We'd been wheat free (and probably gluten free, although we've had a few raw oats) since Jan 2. Both of us have never felt better, and dropped about 10 lbs BTW, although that was not at all the motive for healthier eating.

OP, do you buy gluten-free lunchmeat in the deli? I've never seen it. Although I'm not likely to buy it (I'm at the point where, if we wanted lunchmeat, I'd cook a turkey breast or make salmon salad or something or other) it would be nice to know where it is available if needed. - Bird

The Bird1361377715.641809 PostsRegistered 3/17/2007
On 2/20/2013 Paperdolly said:... My doctor is a colleague of Dr. William Davis, the author of Wheat Belly. He is a firm believer -- as am I -- that the root of all diseases is caused by food. There is more and more research now being published on gluten causing autoimmune diseases. And, usually when a person has one, they will automatically get another and another if they continue to eat gluten. ...

Oh, lucky you to have a good doctor! Although I don't have med insurance, I would not mind paying for a good doctor that is not mostly a pill pusher for Big Pharma. I watch Food Matters (documentary) often to keep me reminded that "you are what you eat." Disclaimer: that documentary seems to be an informercial for high priced DVD programs the presenters are selling on the side, however, it is still inspiring. Public libraries usually have it. - Bird

MrsLorraine1361377747.583995 PostsRegistered 7/5/2012

I'm not gluten or anything else intolerant but I thank you for your post; it was interesting and informative. (I do have a young relative who needs to be gluten-free and she's having a real sturggle with it.)

straykatz1361378266.6838841 PostsRegistered 6/13/2007

I feel so much better when I avoid wheat products, artificial sugars, and processed meats. DH and I have almost eliminated canned goods in our household too as we reduce salt intake. I'm not sure if I have gluten intolerance but the belly bloat goes away along with the achy leg muscles when I stick to a natural diet of whole foods and prepare my own food instead of relying so much on the convenience of processed prepackaged foods.

Good luck to everyone trying to get healthier and feel better.

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@-->-->---

Sometimes you just need to take a nap and get over it.

Paperdolly1361379262.151207 PostsRegistered 3/13/2010Wisconsin
On 2/20/2013 straykatz said:

I feel so much better when I avoid wheat products, artificial sugars, and processed meats. DH and I have almost eliminated canned goods in our household too as we reduce salt intake. I'm not sure if I have gluten intolerance but the belly bloat goes away along with the achy leg muscles when I stick to a natural diet of whole foods and prepare my own food instead of relying so much on the convenience of processed prepackaged foods.

Good luck to everyone trying to get healthier and feel better.

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Nice post and good information!

Proud volunteer for the Wisconsin Adopt A Golden Retriever Rescue and momma to Lucy, Striker, Sophie, Lilly & Ransom

Buttercups1361387570.7274093 PostsRegistered 5/15/2007

Thanks for your thoughtful responses. Yes it's so true, when we eat it all the time we don't associate the symptoms with the food but in fact we are being harmed. Having this unusual exposure makes me grateful for how much better I'm feeling these days.

It's a shame that so many people are dealing with this -- especially children -- but good that there is more awareness about this problem be it celiac disease or allergy/intolerance.

A very good resource I forgot to mention is Celiac.com. They have forums there with tons of information about products including cosmetics... we have to use gluten free lipstick and some prefer everything on their skin to be that way, although I've never had a problem w/hand cream etc.

I'm appalled, appalled to find that sanctimony is going on here.

chrystaltr­ee1361388823.00312607 PostsRegistered 5/10/2010

I didn't go to medical school, so I don't self diagnose and I wouldn't do any trial and error silliness when there is a 100% method for diagnosing a gluten allergy or sensitivity. It's an upper endoscopy with biopsy. Actually THAT is the only way diagnosing it. A positive celiac lab result does not mean that a person has celiac disease or that a person has a sensitivity. Same goes for a negative lab result. That actually happened to a co worker. She tested negative and her quack of doctor didn't order the biospy. Which, years later and much suffering later, showed her to have Celiac. As far as I know, there are no healthy benefits to eliminating or limiting gluten from your diet if gluten isn't a problem. I can see why a family with children who have celiac would do it. It's easier to plan and cook meals and it helps the children stay compliant and vigilant. Other than that, I don't why anyone would do it.

Marienkaef­er1361390925.4875715 PostsRegistered 12/15/2008Beautiful San Juan Islands

My mom has to be gluten free, too. She suffered for years before she was diagnosed.

It is a more expensive way to eat, but there are ways you can alleviate that.

We are lucky because the area where we live is very gluten aware. Most restaurants mark their gluten free items "GF." Or they have gluten free bread you can substitute, for a hamburger or sandwich.

The servers also are aware, so if you ask if a particular item is gluten free, they don't look at you weird, but either know the answer, or go back and ask in the kitchen.

We also have grocery stores that have a lot of gluten free items, including in the bakery.

It's true, gluten is in so many things, that you have to be careful.

The moral arc of the universe is long, but it bends toward justice.--MLK

Buttercups1361392236.514093 PostsRegistered 5/15/2007
On 2/20/2013 chrystaltree said:

I didn't go to medical school, so I don't self diagnose and I wouldn't do any trial and error silliness when there is a 100% method for diagnosing a gluten allergy or sensitivity. It's an upper endoscopy with biopsy. Actually THAT is the only way diagnosing it. A positive celiac lab result does not mean that a person has celiac disease or that a person has a sensitivity. Same goes for a negative lab result. That actually happened to a co worker. She tested negative and her quack of doctor didn't order the biospy. Which, years later and much suffering later, showed her to have Celiac. As far as I know, there are no healthy benefits to eliminating or limiting gluten from your diet if gluten isn't a problem. I can see why a family with children who have celiac would do it. It's easier to plan and cook meals and it helps the children stay compliant and vigilant. Other than that, I don't why anyone would do it.

You are right that the endoscopy with biopsy is considered the most accurate test for celiac disease. There are drawbacks however, one being that celiac can develop over time from an allergy / intolerance to actual celiac, so if someone is on the threshold of having CD, a negative result may be misleading. (Think HIV/AIDS in a progression)

Also, the endoscopy is invasive, so for some the blood test is more comfortable. The best blood tests are 80-90% accurate, so if given in combination they can provide a probable picture. And last, once someone discontinues eating gluten, after a short time neither the blood test nor the endoscopy is useful because the intestinal damage begins repairing itself. If someone stops eating gluten and feels an array of symptoms abate, to resume eating it and remain ill for months just to have an accurate diagnosis may not be wise. A diagnosis is less an end and more the means to an end: to be healthy and feel well.

Also even in illnesses where blood tests are considered quite accurate and have a high correlation with the presence of the disease -- I went through this with lupus because there are numerous blood markers that can indicate this illness -- there is often ambiguity because many elevated blood values point toward multiple possibilities. So doctors always include patient history and symptomology, and these along with blood panel results lead him or her to the diagnosis.

Even good doctors "miss" diagnosing illnesses, especially if they are not the "right" specialty, or the patient exhibits atypical symptoms. Celiac symptoms can look like MS (neurology) or FMS (rheumatology) but it is really a GI problem and this is the specialist best equipped to diagnose. And some specialists have subspecialties, e.g. rheumatologists can focus their practice on FMS or lupus or RA but not all three.

You may have misunderstood my post, or another one to which you refer, but no one here is "diagnosing themselves." As I say, my problem is either an intolerance or celiac -- I don't know which and don't care, as long as I feel dramatically better. I did go through a period right after the test result, wanting the type of certainty you describe, and wondering if I should get an endoscopy, but by then I'd been two weeks without gluten and felt so much better -- ultimately I decided I did not require certainty as much as I needed to just live a good life. If your friend had tried going off gluten immediately after the negative test, she may have begun to heal long before she finally got the accurate diagnosis. I hope she feels better soon, and she's lucky to have your friendship and concern about her health.

I'm appalled, appalled to find that sanctimony is going on here.

JamicaJamm­er1361392378.7272335 PostsRegistered 1/14/2013

Just like anything you eliminate from your diet (sugar, sodium, etc.), you will get a less than pleasant reaction when you do consume it.

MrsLorraine1361393899.413995 PostsRegistered 7/5/2012
On 2/20/2013 chrystaltree said:

I didn't go to medical school, so I don't self diagnose and I wouldn't do any trial and error silliness when there is a 100% method for diagnosing a gluten allergy or sensitivity. It's an upper endoscopy with biopsy. Actually THAT is the only way diagnosing it. A positive celiac lab result does not mean that a person has celiac disease or that a person has a sensitivity. Same goes for a negative lab result. That actually happened to a co worker. She tested negative and her quack of doctor didn't order the biospy. Which, years later and much suffering later, showed her to have Celiac. As far as I know, there are no healthy benefits to eliminating or limiting gluten from your diet if gluten isn't a problem. I can see why a family with children who have celiac would do it. It's easier to plan and cook meals and it helps the children stay compliant and vigilant. Other than that, I don't why anyone would do it.

Thank for you being the voice of reason.

Violet Eyes1361394994.9573438 PostsRegistered 11/9/2012
On 2/20/2013 chrystaltree said:

I didn't go to medical school, so I don't self diagnose and I wouldn't do any trial and error silliness when there is a 100% method for diagnosing a gluten allergy or sensitivity. It's an upper endoscopy with biopsy. Actually THAT is the only way diagnosing it. A positive celiac lab result does not mean that a person has celiac disease or that a person has a sensitivity. Same goes for a negative lab result. That actually happened to a co worker. She tested negative and her quack of doctor didn't order the biospy. Which, years later and much suffering later, showed her to have Celiac. As far as I know, there are no healthy benefits to eliminating or limiting gluten from your diet if gluten isn't a problem. I can see why a family with children who have celiac would do it. It's easier to plan and cook meals and it helps the children stay compliant and vigilant. Other than that, I don't why anyone would do it.

With all due respect, gluten sensitivity varies. Some people have Celiac Disease proven by biopsy.....and if a gluten sensitive person hasn't been eating it steadily for the weeks before the test, the biopsy may come back negative.

A biopsy will only prove overt Celiac Disease whereas a diagnosis of gluten sensitivity is quite different. The symptoms of gluten sensitivity are manifesting themselves and by removing gluten from the diet there is a direct correlation of better health because of the removal. It is not this cut and dry thing where someone just has a biopsy and if it is negative they don't have gluten sensitivity.

cjmcp1361394999.631587 PostsRegistered 12/23/2004Texas
On 2/20/2013 chrystaltree said:

As far as I know, there are no healthy benefits to eliminating or limiting gluten from your diet if gluten isn't a problem.

Read the book "Wheat Belly". You just might change your tune.

violann1361395231.76312703 PostsRegistered 12/12/2004
From what I have read and heard, more people go undiagnosed than those who are false positives.Last edited on 2/20/2013

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I didn't come here to argue.- Peg Bracken

Buttercups1361396177.2274093 PostsRegistered 5/15/2007

For those interested in how CD is diagnosed, this blog is very good. She points out that there is no 100% foolproof test. In the other blog listed at the bottom on genetic testing for CD, she says that CD is now presenting later in life so it can develop over time and the triggers are unclear but could include infection or pregnancy.

http://consults.blogs.nytimes.com/2010/01/12/confirming-a-diagnosis-of-celiac-disease/

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I'm appalled, appalled to find that sanctimony is going on here.

The Bird1361398694.9271809 PostsRegistered 3/17/2007

Buttercups, I forgot to mention that even though I'd probably not get really ill if I ate wheat/gluten again, the amazing result is that my BP has gone down to normal, having eliminated it. Thanks to a comment by a pretty cool Indian doctor I saw 1 1/2 years ago. I though the high BP was the carbs. She said it's probably the wheat. I'm going to have to send her a nice card and gift. :)

Clover291361399465.410628 PostsRegistered 1/19/2008
On 2/20/2013 cjmcp said:
On 2/20/2013 chrystaltree said:

As far as I know, there are no healthy benefits to eliminating or limiting gluten from your diet if gluten isn't a problem.

Read the book "Wheat Belly". You just might change your tune.

Or not:

http://noglutennoproblem.blogspot.com/2012/03/wheat-belly-busted.html

http://www.huntgatherlove.com/content/wheat-belly

The book is one man's opinion. People's mileage varies.

Buttercups1361400266.594093 PostsRegistered 5/15/2007

TBird, great news about your BP.

I'm appalled, appalled to find that sanctimony is going on here.

livehealthy1361844615.9872692 PostsRegistered 2/18/2007
On 2/20/2013 chrystaltree said:

I didn't go to medical school, so I don't self diagnose and I wouldn't do any trial and error silliness when there is a 100% method for diagnosing a gluten allergy or sensitivity. It's an upper endoscopy with biopsy. Actually THAT is the only way diagnosing it. A positive celiac lab result does not mean that a person has celiac disease or that a person has a sensitivity. Same goes for a negative lab result. That actually happened to a co worker. She tested negative and her quack of doctor didn't order the biospy. Which, years later and much suffering later, showed her to have Celiac. As far as I know, there are no healthy benefits to eliminating or limiting gluten from your diet if gluten isn't a problem. I can see why a family with children who have celiac would do it. It's easier to plan and cook meals and it helps the children stay compliant and vigilant. Other than that, I don't why anyone would do it.

I started having major digestive issues just out of the blue a few years ago, and I was a very healthy eater. After a couple years of different tests and different meds, my doc (who did go to medical school) suggested that I take gluten out of my diet for a few weeks. She didn't ask me to take the test, likely because she figured I might just have an intolerance and not an allergy, which is Celiac's disease. I honestly didn't think gluten was the issue because the only bread I really ate came from a bakery and only had a few high quality ingredients. The worst of my digestive issues absolutely disappeared the first day I got off gluten, and I never had to take meds again. Every once in a while, I'll eat a little gluten or wheat or whatever it is that bothers me, and the horrible chest pain will return, though thankfully I can now control it with tums. Honestly, the difference was night and day because back then the chest pain was coming more regularly and lasting longer and longer even though I was taking medicine. I was shocked, but I'm a true believer now that gluten does bother some people, whether they've been tested or not. If they choose to take it out of their diet and they feel better, why would anyone else even care???

livehealthy1361844710.092692 PostsRegistered 2/18/2007
On 2/20/2013 Violet Eyes said:
On 2/20/2013 chrystaltree said:

I didn't go to medical school, so I don't self diagnose and I wouldn't do any trial and error silliness when there is a 100% method for diagnosing a gluten allergy or sensitivity. It's an upper endoscopy with biopsy. Actually THAT is the only way diagnosing it. A positive celiac lab result does not mean that a person has celiac disease or that a person has a sensitivity. Same goes for a negative lab result. That actually happened to a co worker. She tested negative and her quack of doctor didn't order the biospy. Which, years later and much suffering later, showed her to have Celiac. As far as I know, there are no healthy benefits to eliminating or limiting gluten from your diet if gluten isn't a problem. I can see why a family with children who have celiac would do it. It's easier to plan and cook meals and it helps the children stay compliant and vigilant. Other than that, I don't why anyone would do it.

With all due respect, gluten sensitivity varies. Some people have Celiac Disease proven by biopsy.....and if a gluten sensitive person hasn't been eating it steadily for the weeks before the test, the biopsy may come back negative.

A biopsy will only prove overt Celiac Disease whereas a diagnosis of gluten sensitivity is quite different. The symptoms of gluten sensitivity are manifesting themselves and by removing gluten from the diet there is a direct correlation of better health because of the removal. It is not this cut and dry thing where someone just has a biopsy and if it is negative they don't have gluten sensitivity.

So true! Thanks.

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