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Gemini

Member Since 25 Aug 2006
Offline Last Active Today, 10:30 AM
*****

#921531 Anyone Ever Been Glutened By Ground Beef?

Posted by Gemini on 25 June 2014 - 07:27 AM

I've only been here a short time, but two ideologies seem to be prevalent around here. One ideology trusts in empirical, well-researched, current medical thinking. The other takes a more skeptical view of standard medicine and may give more credence to to anecdotal experience (both theirs, and that of others) and to alternative medicine.

 

I think that in some cases the second group (into which I fall, BTW) may be a bit more skeptical because we have been burned in the past by traditional medicine. Many of the health improvements I've experienced haven't come as a result of traditional medicine, but as a result of anecdotal help I've received from talking to others, searching the web, etc. I realize that this makes me laughable to some, but I've received enough help from listening to others' experiences that I don't care.

 

When it comes to things like this thread, these two ideologies can wind up clashing. Those who trust labels, etc., trust. And those who don't, don't. All of us are dealing with things the best we can. What I wish is that both groups would one another a little slack. Trying to navigate all this is hard enough already.

 

I realize I'm generalizing here. Please don't be offended if my categories don't quite fit your situation.

I don't think learning to read a label correctly has anything to do with trust issues.  There really is a learning curve with Label Reading 101 and if industry continually screwed it up and had allergens in a food source that was undisclosed, people would be getting sick all the time (and it isn't all about Celiac, either) and that is not happening.  Truth is, I am sure it can and does happen but not on the epic scale some people think.  There are so many other reasons why people with food allergies and intolerances react to food and it may or may not have anything to do with their individual problem. Most of the mistakes or questions I see here lately are either from learning that still needs to happen or

learning from the wrong sources.  The ones that perpetuate urban myths about where gluten is.  Because it is there in some places and not hidden because it would have to be declared.

 

CC is a whole 'nother issue and that's why every food store I have ever been to in my area has disclaimers now about allergy issues and cc. Right up front where it's easy to see. It's up to you, as the consumer, to have a look and see if there is any chance of something cc'ing the food you want, in the case where it sits. Ask questions.

 

I am not against labeling laws but I also have never had trouble figuring out what was safe for me to eat in any situation.  When in doubt, eat something else. If newer labeling makes things easier, fine, but you still are going to have to learn about this diet and use your head to figure things out. I have been doing this for a very long time and it does become second nature and should get tremendously easier. And if the unthinkable happens and you sustain a hit, lesson learned and move on. It won't happen nearly as often the longer you do this.


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#920761 Tell Me About Your Corn Sensitivity.

Posted by Gemini on 18 June 2014 - 07:02 PM

I have to agree with the 3 of the smartest ladies on this forum.......corn is hard to digest and contains a lot of sugar, which can be problematic to a healing gut. That is most likely the reason for some of the problems experienced by some here. And to make it clear to anyone reading this thread......the corn crop is not cross contaminated with gluten. Not one reliable celiac organization has ever come out with that one and I'm sure if it were a problem for us, it would be mentioned in numerous publications. Let's not go off in the weeds any further than this forum has been headed lately because this kind of information is not helping anyone!
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#919906 My Doctor Doesn't Know Anything About Celiac Disease...do I Even Have It?/

Posted by Gemini on 11 June 2014 - 12:41 PM

Thanks Gemini...I want to hug you.  I'm breathing and relaxing.

 

I'm really bothered that the Dr refused to check my antibodies.  It's been 5 months.  He said there was no reason to...ever.  I've been looking at Dr's...what will my insurance cover, etc.

 

My faith in Dr's is really shaken and it was years ago.  I've had medical issues for so long...so many.  When I was in my 20's I was having repeated numbness on my left side...specifically my arm and leg.  Months and months of this.  Pain, fear, etc.  My GP at the time just didn't want to deal with it.  She told me at one point that I probably had MS or a brain tumor.  Finally she schedules an MRI and what I had was a bleeding lesion on the brain that was causing seizures.  This led to brain surgery.  I left her practice after that.  It just seems like Dr's are fine if you have strep or need medicine...but if something is really wrong...they just don't know.

...and if I were next to you, I would hug you back and give you a cookie!  :D

 

You said it in a nutshell....your doctor doesn't know squat about Celiac and that is far too common, I am afraid.  I was sick for 30 years and ended up down to 94 wobbly pounds and wasting away before I figured it out and requested the blood panel. I had symptoms out the whazoo and every single one of them disappeared over the next 3 years gluten free. As they say, hindsight is 20/20. I still have a lot of trouble trusting doctors and am very cautious about what I let them do or don't do. Yes, that is my problem but when you have been screwed over and nearly died from their mistakes, it shakes you to the core. I understand your feelings totally.

 

I am so sorry you had to endure what you did and then ended up having brain surgery.  Reading all you have written about yourself, I would say you are a screaming Celiac, like the rest of us here.  And yes....it can cause brain lesions, that is well documented. I have always said that unless it can be seen on an x-ray, good luck having many doctors find it.  The doctor gems are the ones who will ask why you are seemingly falling apart with so many problems and look at you as whole body and not treat each organ/body problem separately.

 

Get yourself a new doctor and let us know how it all goes. We are on the same team here and really do care. Do not eat gluten...they can still look at your gut to make sure everything is healing well.


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#919902 My Doctor Doesn't Know Anything About Celiac Disease...do I Even Have It?/

Posted by Gemini on 11 June 2014 - 12:27 PM

Really? From what I understood from my (admittedly limited research) and from speaking to several gastroenterologists and dieticians, the biopsy is still the gold standard. The blood results can have false positives, as well negative results when in fact the patient has Coeliac disease. Also aren't there numerous other conditions that can cause the same markers in the blood as celiac disease? There are also certain blood test for celiac disease that aren't recommended becasue they give unreliable results if you have an IgA defficiancy.

 

Admittedly, if you get positive blood work and going gluten free helps, then chances are you have celiac disease, but saying "you do not need a biopsy for diagnostic purposes" is a bit of a dangerous statement isn't?

Any time you ask a GI doctor, they are going to respond that you need a biopsy for diagnosis.  I think part of it is liability driven and the other part money.  In some circumstances, a person might need to move on to a biopsy if their blood work was inconclusive and came back as a weak positive and then the biopsy can be used as a back up diagnosis, if you are lucky enough that they hit the right spot and find damage.  I believe even a weak positive is indicative of Celiac but as you can see from reading this forum, some folks need more proof to convince them they have it and to stick to a strict gluten-free diet.  I can understand that if they aren't that familiar with the disease or the diagnosis criteria.  It is not always as clear cut as other diseases.

 

As far as I know, there are no other diseases that will elevate blood markers except the tTg. That can be elevated from other autoimmune diseases which are commonly seen with Celiac.  However, the DGP and EMA will only be positive from Celiac Disease. 

 

All of the IgA related testing in a Celiac panel will not be useful if a person has an IgA deficiency.  They could have the IgG related tests done but may choose to have the biopsy if these are elevated because the EMA test is IgA based and that is usually the clincher in a blood panel for Celiac Disease.

 

http://www.curecelia...-ema-blood-test

 

Taking all this into account, I stand behind my sytatement that for many people, a biopsy is not required for diagnosis.  Even Dr. Fasano, one of the leading researchers and Celiac physicians, has stated the same.  Celiac testing is not a one size, fits all kind of thing.  The bottom line for me is that if someone shows clear cut benefits from eating gluten free and regains their health, I stand behind them 100%. That is far better than having a negative biopsy and not going gluten free and becoming sicker and sicker.

I know relatives who had this happen and I am watching them suffer all because they believe a doctor unquestioningly.


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#919743 Safe Wines For Super- Sensitive People?

Posted by Gemini on 10 June 2014 - 11:49 AM

 

Here is a link to an article that talks about why vintners don't list ingredients. And grapes are often a crop that is doused heavily in pesticides and herbicides so if you react, it might even be to a residue of something toxic left on the grapes themselves

How about buying a good quality wine and drink it and stop worrying about what may or may not be lurking in it, courtesy of all those evil wine makers out to get us?  :blink:

 

 

 

                                                                                                                                                                                                             -LTES-


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#919740 Marsh 1

Posted by Gemini on 10 June 2014 - 11:19 AM

Thanks for your post Peter. I suspect this is celiac disease too. A friend was diagnosed in her 50s and her villi will never fully recover. I don't want that to happen to me and am taking this very seriously. I also suspect my dad and my son have it too. My dad is now in a nursing home with dementia and we are awaiting the blood results for my 4 yr old son (whose eczema is starting to look like dermatitis herpetiformis.)

In reality, a person does not have to have 100% functioning,healed villi to be healthy.  There is overlap in the small intestine of areas that absorb different nutrients, meaning that if there is damage to one area that absorbs iron, there are other areas that absorb iron also. Is it optimal that you have the whole thing working well?  Sure...but it isn't necessary for health.  I was diagnosed in my mid 40's, after a whole lifetime of symptoms and I have healed well and am healthy now, with no deficiencies.

 

For the record, I would consider you a bonified Celiac.  Marsh 1 is the first stage of damage from Celiac. Having elevated lymphocytes is another big, red flag.......even though the medical profession usually won't give their blessing until you reach almost maximum damage   It's about as silly a logic as one can have.  No other disease state requires you to become that sick before they call it what it is.  Do they wait until a diabetic is in a coma before they acknowledge they have diabetes?  A big, fat no to that one!  You were lucky to catch the damage early before you go any further with it and I would stay on a strict gluten-free diet for life and stay healthy.  The anemia will go away once you do that.


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#919583 Disability

Posted by Gemini on 09 June 2014 - 11:54 AM

I am applying for SSI disability. 

 

I am not sure about your story but I have been sick my whole life, I am 37 now.  I have osteoarthritis in my spine, Grave's disease, severe weight loss >160 pounds and still dropping ( I weigh 150), I had chronic migraines ( 3-4 a week but haven't had any now in the last two months), severe vitamin deficiencies, and the list goes on.

 

I am just starting my process with the state and not sure if I need my doctor involved in the initial process or if I get him involved if I am turned down and need an appeal. I didn't have a job when I was diagnosed so therefore I didn't have the short term disability available to me. I have my complete medical history for them if they are interested in 1000 page books lol.  I can't imagine I would get turned.

You know, Beth, many of your symptoms from Celiac will abate and go away with time on the diet.  Many of us were at death's door and made a complete recovery, after many years of suffering. It is possible that you will recover well enough that you can work eventually.  It sounds like you need short term disability as opposed to SSI disability. Does SSI offer short term?  I do not know much about disability insurance because I recovered and work full time now, so never needed it.

 

It is not easy getting SSI and it should be that way because there are just too many people who abuse the system.  You know how it works......the ones who need it don't get it and the ones who should not qualify seem to find a way to do so. It can be a very unfair system, like many things. But Celiac Disease and it's related health problems rarely are permanent enough that you can't recover and be well.  I hope you have this outcome!


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#916804 This Is Just Beautiful!

Posted by Gemini on 20 May 2014 - 01:15 PM

Why is it that people go to these phenomenal restaurants and then have a cow when there is no bread?  REALLY?  You can get bread anywhere and I never, even before diagnosis, thought the bread basket important.  In fact, I never ate much from it because it wasted precious gut space that could be saved for the real food I went there for.

 

I just thought the demise of the bread basket funny and a real boon for us......no more flying crumbs that end up in MY gluten-free meal!  ^_^


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#916795 Who Needs A Dexa Scan?

Posted by Gemini on 20 May 2014 - 12:27 PM

The doctor just told me that DEXA scan may not be covered for every celiac.  She seemed unimpressed to hear a doctor told me my bone mass was nill when I was 25 years old.  I had 30+ years of celiac.  I will call my insurance and find out, but anyone know of general guidelines? 

Maybe they are unsure of what is covered now that our health system is being tampered with?  I have had 3 of these things myself and never had problem with coverage.  I think if you have an underlying condition that can damage your bone density, coverage is different than for those with normal bone density.  You have to ask your insurer....good luck!


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#916645 Gluten-Free Rice

Posted by Gemini on 19 May 2014 - 10:41 AM

As far as I know, duck is gluten free, depending on how they are served up!  ;)


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#916627 Gluten-Free Rice

Posted by Gemini on 19 May 2014 - 09:14 AM

For anyone doubting Lundberg's quality control and growing/harvesting/storage procedures, refer to their Farming Practices page and their Food Safety page, which I have provided links to.  If this isn't good enough, then I suggest sticking to a diet of fruits, veggies and protein because this is about as good as it gets!  :)

 

http://www.lundberg..../Practices.aspx

 

http://www.lundberg....afety_Tour.aspx


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#916044 Always Feel Like I'm Having A Reaction

Posted by Gemini on 14 May 2014 - 01:01 PM

This is not a matter of not understanding nutrition, but knowing that much of the population is suffering from vitamin deficiencies, whether they are gluten-free or not. Being gluten-free simply means that you lack access to the most commonly fortified food - wheat flour - and many gluten-free flours are not fortified at all. I'm fully aware that wheat, barley, and rye don't contain any vital nutrients that can't be found elsewhere, but I am also aware that there is a reason wheat has been fortified for more than 50 years despite that there aren't any regulations requiring it.

Edit: The 2002 study out of Sweden that found vitamin deficiencies in people who had been gluten free for 8-12 years. 

http://onlinelibrary...0df379ed62518b3

I would tend to disagree that much of the population suffers from vitamin deficiencies. That is alarmist stuff. Those with malabsorption issues would have to worry about it but if they learn about nutrition and where to get the vitamins and minerals needed, plus address their malabsorption problem, it should rectify itself.  If you eat a balanced diet and take appropriate supplements, most people should be good to go.  It really is all about learning how to eat.  Many people today have no clue what's in the food they eat and tend to gravitate towards low quality carbs. I am sure there are people who are vitamin deficient but I doubt its "much of the population". That is like saying most people should not eat gluten.  I don't buy into the idea that everyone has a problem with gluten, either.


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#916038 I'm Sure You Get Asked All The Time, But...lab Results

Posted by Gemini on 14 May 2014 - 12:34 PM

Ummmmmmmm......you have Celiac Disease and I want to welcome you to the club!  :)

 

Your tTg/IgA is way, way elevated and that correlates to intestinal damage.  Not to worry......mine was around 200 and I healed very well.

 

The EMA test (Endomysial) is positive and that test is very specific to Celiac, meaning only Celiac can cause a positive result.  It is a little odd that your total IgA was only 96 as your tTg is quite high.  I had a total count of over 700 on that when I was diagnosed but you cannot ignore the other 2 tests which are the biggies for celiac blood work.

 

Did they run a DGP?  That test is the one which tests for the reaction to gluten in the blood.  A positive on that means you are ingesting gluten and are reacting to it and it's the test that should be repeated at least once a year to make sure you are not ingesting any after you begin the diet for awhile.  It can take a year or more for your blood work to return to normal, if you follow the diet correctly.  Are you very symptomatic?

 

At this point, you can either just follow the diet or opt to have a biopsy but the biopsy is not needed for a diagnosis, with these results.  It is a matter of personal choice.  Congratulations on getting a diagnosis....now you can get your health back!  :)


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#915832 Always Feel Like I'm Having A Reaction

Posted by Gemini on 12 May 2014 - 11:25 AM

I'd get tested for vitamin deficiencies if you haven't already as they can cause you to feel really awful and can actually cause many of the problems you've described. To make matters worse, the deficiencies you may have had before going gluten-free from malabsorption would be different than those you get after, when you're skipping the fortified wheat or fortified milk products. Because supplements have their own problems, I would definitely get tested first (easy blood test) and only supplement those you need. 

But if you're getting glutened that frequently, you're probably taking risks that you shouldn't. Is it time to do more research into hidden sources of contamination, keep a food diary to narrow in on culprits (gluten or perhaps some other intolerance), or to stop eating out entirely? 

I can say that after I managed to stay 100% gluten-free for several months, my reactions to even minor contaminations eased up quite a bit. I can still tell you if a food, even those being sold as gluten-free, contains gluten within a few hours of eating it, but the reaction is a minor annoyance rather than the major inconvenience that it was in the first few months. So perhaps there is something in your routine that isn't as gluten-free as you thought it was that is keeping your autoimmune reaction amped up to full throttle.

No one should be having additional nutritional deficiencies after diagnosis, if you are eating a healthy diet.  You do not need fortified bread or milk to live well and be healthy.

I eat very little dairy because I am still sensitive to it after 9 years gluten-free and I have no deficiencies and am healthy.  Ditto for bread. There are some great choices out there for nutritionally sound, gluten-free bread so , as long as you aren't eating the white stuff, you should be fine.  I think it all boils down to lack of knowledge of nutrition, not from the inabiltiy to eat all that fortified crap.......and most of it is crap. 

 

To the OP.....you sound like you have additional food allergies or intolerances.  If you are being that careful with your diet, then it's probably not contamination....which everyone seems to always think it is.  Gluten does not lurk everywhere. And bananas cannot be confused with gluten by your body.....that cross reactive stuff is nonsense.  No valid scientific merit to it at all.  Bloating can be caused by parasites or H. Pylori....have you been tested for those conditions?

 

Keep it simple and plain and keep track of what you eat and the reaction you get.  That may help you to figure out what the problem is.  After 4 years gluten free, you should definitely feel better than this.  But if you have other food sensitivities/intolerances, that will keep you from feeling well.  I hope you feel better soon!


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#915678 How Do You Emotionally Deal With Setbacks?

Posted by Gemini on 10 May 2014 - 12:24 PM

This wasn't directed at me but nonetheless I found it great to read, thank you for writing it.


You're entirely welcome! It's always a pleasure to know I may have helped put someone in a better frame of mind. Life will always have it's challenges and the key is to find a way to deal with them and make them comfortable. It's the best way to fight back and win!
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