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Member Since 13 Sep 2013
Offline Last Active Yesterday, 11:48 PM

#950276 Research Discrediting Gluten Sensitivity - Step Backwards

Posted by on 19 August 2015 - 07:42 PM

It is important to note that this study that blew up news sites with misleading headlines does not totally discredit gluten sensitivity.  It is a single small study that does show that many people who think they are gluten intolerant and do not have a diagnosis of Celiac disease actually have a problem with FODMAPS.  That is actually a real issue, but does not mean "gluten sensitivity does not exist", "gluten intolerance is all in people's heads", "gluten intolerance was just proven to not be real", etc like all those headlines state.  When this study and all the news articles came out in 2014, I had more than one person call me up to say "Hey I saw this article that your problem is actually not with gluten".  What I did was explain to them that: A. I have Celiac disease, which is a very real medical condition, and different from gluten intolerance, B: The study does not disprove the existence of gluten intolerance and is a lone study with a small sample size and narrow scope, and C: The one thing it does highlight is the need for people who go gluten free by their own accord to get a proper medical diagnosis, as what they think they should avoid eating and what they really are having problems with are similar but not quite spot on.


This is just a classic example of irresponsible reporting on the part of mass media.  If people come to you with a misunderstanding of it, link them to the original publication abstract which gives a pretty good overview of what the study ACTUALLY found.  http://link.springer...1882-013-0386-4


On a final note, this is why any time one reads any article that is about a medical study, especially with a catchy headline, you should read the original study.  Usually you can find a source with a good abstract, which is just a summary paragraph that is usually enough for a good understanding of what the scientists actually found versus the blown up exaggerated version the media painted.

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#945903 Glutened Vs Stomach Bug?

Posted by on 19 May 2015 - 08:34 PM

On the poor immune system side of things, before I was treated for immunodeficiency which includes my low IgG and low IgA, any time I would get a GI bug or food poisoning it would be BAD.  Like husband would have diarrhea for a day, I would have the most severe kind for 5 days.  So him having a weak immune system is going to make things take a little longer and be more intense some times.

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#945663 Glutened Vs Stomach Bug?

Posted by on 14 May 2015 - 11:44 PM

With his potential immune issues that are being looked into, it could be that he does have a stomach bug and is getting hit very hard.  Unfortunately in these circumstances there just isn't a good way to know.  But it never hurts to be more cautious about germs and more strict about gluten.

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#944786 Who Is Currently Taking Synthroid?

Posted by on 27 April 2015 - 06:11 PM

I also take Mylan levothyroxine, which is a generic.  A lot of doctors will have patients take brand name to prevent them from moving from one generic to another.  With levothyroxine, the doses are so tiny, that a slight difference between brands can cause blood levels to fluctuate.  So when you take one generic brand, stick with it.  If you change brands, go get your thyroid levels checked 6 weeks later.


As for the doctor insisting you take brand name synthroid despite it not being verifiably gluten-free.. just firmly tell him that you cannot take that medicine as it may contain gluten, and have him write you a script that allows generic substitution.  Then find one manufacturer and stick with it.

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#944657 Anyone Highly Air Sensitive To Wheat Here? Lifestyle/adjustment Questions

Posted by on 25 April 2015 - 11:00 PM

Welcome to the forum!


So, I read all of your posts, so you have Celiac disease and a wheat/soy allergy?  That is definitely a lot to deal with.  Having the actual wheat allergy on top of Celiac disease definitely complicates things.  While there are some people with Celiac disease who feel they get ill from just walking past the bakery at the store (you can converse with those people exclusively by using our super sensitive section, which I recommend for any other airborne conversations), the majority of Celiacs do not have symptoms to that degree, since gluten has to get into their mouth to cause a problem.  So while a person with Celiac disease can handle, say,  a piece of gluteny bread, and wash their hands and be fine... someone with a topical wheat allergy obviously can't.   Do you live in the US?  If you don't, go ahead and put that on your signature line (along with something saying you have an actual wheat allergy) so we can tailor our answers to you.  Most product info here on the board is for the US, although we have a good number of Canadian and other international members who give great information.


Not being able to participate in the societal norm of having food-based gatherings can be a huge drag on your life.  My family is the "Omg you need to eat something!" type and even though they mean well, I know they feel a little slighted when I leave the gathering early to go home and eat.  A lot of us will bring our own food to things, but given how severe your allergy is, that may not be the best option if you can't even go somewhere.  But if there is a place you do feel safe going, bring your own food and don't apologize.  I actually keep a doctor's note for when I go to places where outside food isn't allowed in case they give me trouble.  


You just have to create your new normal, invite others in, and sadly, leave behind those who don't feel the need to do simple things to not make you sick.  If they aren't willing to do something so simple to avoid hurting their friend, then they aren't a real friend after all.  Leaving behind old hobbies and having your life flipped upside down by illness can be a very bumpy ride in life.  Some of us here have talked with counselors to help cope, especially when friends and family are extra isolating, other illnesses are involved, and depression sets in.


I actually understand the mask wearing thing.  I have a Primary Immunodeficiency disease, which means I naturally lack part of my immune system.  If there is a flu going around or I am someplace with huge crowds, and when I fly on airplanes, I keep a mask in my purse and sometimes wear it to protect myself because those germs get to me much easier than the average person.  People will freak out and be so rude, so I only wear it if I feel it is absolutely necessary.  Luckily I work from home,  keep my distance from strangers, and don't do it very often.  Especially when the ebola thing was big news, so many ignorant people out there I wouldn't dare wear it even though it was flu season.  LOL  I don't get out much, either.  Haha.


Moving away from your current area may be something to put off for a while so you can maybe work on trying to increase your level of happiness so you don't end up isolating yourself and increasing levels of depression.  However, if you feel that your immediate area is a source of stress and illness, then definitely get out of there.  I am around the same age as you, and I also understand the difficulty of avoiding comparing yourself to other people, having to give up a successful, lucrative career in the medical field that I worked so hard for.  Remember that their relationships, jobs, and families that look perfect from the outside are causing them to probably be stressed out, that there is a 50% chance they will be divorcing, and their kids are not the perfect angels they make them out to be on social media.  Try your best to learn to love yourself and your imperfect life, and be grateful for what you have and what you can do.  That, of course, is a struggle on a daily basis, but if you can increase the number of good days and decrease the number of bad days, then that is winning :)

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#944654 Airborne Gluten Discussion

Posted by on 25 April 2015 - 10:14 PM


I didn't have noticeable issues being around airborne wheat until about 1.5 years after my diagnosis. So it is possible you are having small reactions but not noticing it when they cook.  You also may be one of the lucky people that just has a slight intolerance that will be able to cheat occasionally, but if you have a blood test positive for celiacs you are probably more sensitive than that. 


Since you are new to the disease, here's my .02 to watch out for : Caramel coloring is made of wheat, avoid Soy Sauce unless it's specifically gluten free, check ALL of your hair products for wheat, or hydrolyzed wheat protein (I got VERY sick for a month from using shampoo with wheat in it, about 1 year after my diagnosis). Sushi rice, also can contain gluten. Pet foods are notorious for having gluten, I've seen dog, cat, fish, and chicken feed all contain it as major ingredients. Look out for Malt flavoring in certain cereals and foods as well.




Welcome to the forum, Wheatless32! :)
Do you have Celiac disease or just an Wheat allergy?  People with only Celiac disease do not have a topical reaction to gluten, it has to get in their mouth to make them sick.  Either way, having a wheat allergy is going to give you some separate, more severe issues than someone with just Celiac disease.
A few things to note:
-Caramel coloring in the US has to be notated that it is made with wheat on an ingredients list, by law, if it is. However, almost all caramel coloring in the US is made with corn, because it is cheaper.  (Are you in the US?)
-Sushi Rice, sometimes called glutinous rice, actually does not contain the gluten that us Celiacs react to.  They just call it that because it is a sticky kind of rice.  
(Other tips on soy sauce and malt are spot on, though.)
Lastly, and most important, NO ONE with celiac disease or a gluten intolerance has the ability to cheat if they truly have that medical issue.  Now, when you get into the fad dieters who eat gluten-free because they heard it on the Dr. Oz show that it will make them lose weight, etc, those people probably don't have a real medical issue and can do whatever they want.  But the majority of people here on the forum are here because we eat a gluten-free diet out of medical necessity.

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#944552 Another Pots And Pans Question

Posted by on 22 April 2015 - 09:02 PM

Agreed with the above.  Clean any gunk out of crevices and you are good to go.  No need to replace pots and pans unless they are seriously gunked up and can't be cleaned.

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#944551 Poop

Posted by on 22 April 2015 - 09:01 PM

Yeah, that isn't gluten coming out.  It may be mucus, which can happen around stool when you are very constipated as it irritates the GI tract.  Probiotics alone are probably not enough for the constipation.  Take a look at the links below for some ideas on foods that may assist in loosening things up gently.  Also, a fiber supplement or even foods like prunes can help.  Eat your fruits and veggies, limit things like processed foods, dairy/cheese, and choose whole grains over white grains.  For example, brown rice and brown rice pasta over their white rice counterparts.  If you don't get a lot of fiber in your diet, do add it gradually, as the initial phase of getting out the old leftover constipated stuff can cause some discomfort.  Prunes are my magic cure for chronic constipation (we call it "C" around here, lol) and if you want to try that out, just eat 1-2 a day, then you can kind of go by how easy the go is to figure out how many is a good number to eat each day.





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#943370 Gluten Free Beers-- Reviews

Posted by on 02 April 2015 - 11:26 PM

Do note that many of the beers they review here are the "Gluten Removed" kind, which I do not recommend Celiacs consume.  If you do, it is at your own risk.  


The comments on new planet are funny, because my husband tried that at a GFAF expo and was gagging, lol.  But he also doesn't like regular beer.

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#943105 Struggling...

Posted by on 28 March 2015 - 05:55 PM

If you and the kids are fine and ate the same thing, it may be something else he ate or a bug he caught.   Some people can't do xanthan gum but we already know this is not in your meal, so unless he has a problem with a specific ingredient that you have yet to pinpoint, it may just be bad timing caused by something else.  Usually bad meals don't make you sick until a few hours later or the next day, depending on what is going in.

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#943103 Mexican?

Posted by on 28 March 2015 - 05:50 PM

Have you gotten him tested for Celiac disease?  For testing to be accurate, he needs to be consuming gluten.  If that is not in the plan for you guys and you are just going gluten-free without a diagnosis, just know he will have to go back on gluten eating for any future testing to be accurate.  

As far as the grief over not having the old things, it is kind of like losing a beloved pet, it does fade but it takes time.  For an adolescent I am sure it is harder than for adults, but some of it will fade in the long run, especially if he feels a lot better and realizes what the benefit is.

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#943080 Qrunch Toastables

Posted by on 28 March 2015 - 11:44 AM

With the price thing, it is something you just get used to after a while.  Instead of "ouch I have to buy the 6 dollar flour" it is "I am going to buy flour".  You just accept it as reality and maybe give a little more to the grocery budget.  I will steer towards things that are more economical if there is a big cost difference per serving among two safe choices.  Usually the gritty texture is from rice flour, but I am sure some of the other gluten-free flours can do that.  

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#942758 Iv Nutritional Therapy

Posted by on 23 March 2015 - 05:18 PM

Not many people on the board have been on TPN or IV vitamins other than iron, but if you are to the point that you need it, you are probably going to feel tons better with it.  Sorry I can't give you too much more info, but I do hope it makes you a lot better.

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#942685 Iv Nutritional Therapy

Posted by on 22 March 2015 - 11:47 PM

What exact IV nutritional therapy do they have you on?  

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#942618 Heb Blendables

Posted by on 21 March 2015 - 07:11 PM

HEB is a supermarket chain in Texas.  They have Central Market which is their more upscale gourmet place, in the big cities.  They have lots of good store brand stuff and are the best around here as far as labeling store brand things as gluten-free which helps save money on that gluten-free grocery budget. 

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