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Gemini

Member Since 25 Aug 2006
Offline Last Active Yesterday, 11:32 AM
*****

#783567 According To Recent Data, Gluten-Free Doesn't Seem To Be Enough

Posted by Gemini on 28 March 2012 - 06:42 AM

I am not surprised by this at all. Of the 12 celiacs I have met, not one of them has healed to the point where they feel as healthy as they did before the celiac disease kicked in.

I don't take multi vitamins but I make fresh vegetable juice with a little bit of fruit in it 3 times a day. I've tried not juicing or only doing one and I just don't get the nutrients I need from it and if I forget to juice after 3 days I feel completely flat and useless energy wise.


But do you think they really felt well before the diagnosis? Sometimes, the downhill slide is so slow, you do not realize how bad you really are and then it's hard to make a comparison.

It really can take a long time to heal well and that is something people don't really understand today. I went 3 full years before all of my symptoms went away. I have taken probiotics for years, well before my diagnosis so that may have helped me heal well. There are so many factors involved, coupled with individual needs, that one should not despair that they will ever heal. You also have to take into account aging, which will produce additional problems whether you have Celiac or not.
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#783387 According To Recent Data, Gluten-Free Doesn't Seem To Be Enough

Posted by Gemini on 27 March 2012 - 12:34 PM

Haha I love arguing with theists. Something good happens, thank God. Something bad happens, oh well it's all part of his plan.


Who is arguing? I was making a point but, apparently, it was lost on you.
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#783358 According To Recent Data, Gluten-Free Doesn't Seem To Be Enough

Posted by Gemini on 27 March 2012 - 10:18 AM

If God really had a plan he wouldn't of give us these bullshit disorders in the first place


God does have a plan.....maybe you don't see it? The world is not supposed to be perfect, otherwise, people would never learn from their mistakes.
Life is a learning process. I have never considered this a BS disorder because I have adapted well and live a normal life. Is it convenient? No, but that's the worst thing I can say I've encountered when learning to deal with Celiac Disease. I guess I have seen too much really serious illness in others to make me thankful that I was given something that I had such control over. And if you think that I wasn't that sick from Celiac, I can assure you that I was deathly ill at diagnosis. I am also mostly lactose intolerant so it's not just gluten I have to avoid. However, I've found the balance that keeps me from having a chip on my shoulder about it. There is life after a Celiac diagnosis.
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#783042 According To Recent Data, Gluten-Free Doesn't Seem To Be Enough

Posted by Gemini on 26 March 2012 - 11:15 AM

Does no one else see that article as overly alarmist?
We see plenty of highly-affected celiacs/NCGIs online but percentages have to be skewed by the more affected being online more, continuing the search for health.

I was amazed when I joined yahoo's bay area celiac group. Seemed out of ~30 ppl, only 2 or 3 still had any celiac-related problems at all.

It shouldn't be a news flash that scarred tissue doesn't always 100% heal.
Thinking not so much flattened villi as scalloping would/could be analogous to scarring, but I don't know enough biology to know. I know my own past gut pain felt more seriously physiological than flattened villi.


I haven't even bothered to look at this article because there has already been enough alarmist stuff printed about Celiac without adding to it with another. I do agree with you Tom and if people have the expectation that they probably won't heal, then they probably won't.

I was in pretty bad shape at diagnosis with virtually no villi left yet, after 7 years, feel great. I also cannot tolerate much dairy either so I guess maybe I haven't healed healed 100%. Who cares? This is why God designed a back up plan for the small intestine. He gave us 22 feet, with overlap on the absorption front, so if a part of it were compromised, then another portion would take over. I think the numbers of those who don't heal to the point where they cannot function normally after giving time for healing, is pretty low. Maybe this is designed to keep people afraid and running to doctors all the time.....good for business. I have 3 other autoimmune problems besides Celiac so I'm not someone who only had symptoms for a week.
I suffered long term but once diagnosed, healed well enough over time that I live a completely normal life. I find that those who still consume gluten and eat like most Americans are always complaining about their medical problems and have many more problems than I do.

As you age, body parts are not always going to work perfectly. That's normal for everyone. I think if gluten free were not enough, there would be an epidemic of people who just would not heal. The incidence is small and is usually the result of other conditions that come with a delayed diagnosis of celiac or illnesses that co-exist with it, like Crohn's or colitis.
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#781953 Are All Gastro Dr's Inept?

Posted by Gemini on 20 March 2012 - 01:38 PM

Glad to hear I am not overreacting. I was only on the Amitriptyline for 1 day, it made my dry mouth worse so I stopped it. Although the only thing my diet has not cleared up is my dry mouth, it seems to be getting worse in the past couple of days and I don't think I added any new foods/drugs in that time. I wanted to discuss it with the Dr today but the whole conversation went south when he told me to not get ahead of myself. I have also had new side pain (knot) in the duodenum area that I wanted to talk to him about but he just said pains will come and go and that my reflux could even return someday. I am having my GP run tests for Sjogrens just in case. But I at least thought the diet would make it better. Not sure what is going on there. Any thoughts?


I have Sjogren's Syndrome and have a few questions for you. Are you diagnosed with it or are your symptoms making you believe you do? Like Celiac Disease, the antibody testing for Sjogren's, called SS-A and SS-B, does not always show positive, even if you have the disease. It's the way things go with autoimmune diseases. I tested VERY positive for Sjogren's but have all the major symptoms also. Are your eyes really dry? Do you have trouble swallowing bread without drinking something to get it down your throat? These are the hallmarks of Sjogren's.

I went until the age of 46 before I got the Celiac diagnosis but by then, a lot of damage had been done. I had dry mouth and tooth problems (major) my whole life yet no one picked up on any of it. I have severe dry eye and mouth and, although it got somewhat better, it did not go away just from the gluten free diet. If you trip for another autoimmune disease, it will not go away. You can manage it better but it will not go away. Many people think the gluten-free diet is a cure all for other autoimmune diseases but it is not. If your mouth is that dry, then you probably have Sjogren's. I never take meds because they make the dry mouth worse. I have butted heads with many a doctor because they like to put people on meds to keep them coming back but I have always refused and they will never get it because they don't suffer from Sjogren's. I didn't need them anyway....it's all nonsense. That is their answer to everything.....NOT!

It takes a while to heal from Celiac and you will have symptoms and other issues pop up during this time so don't sweat it. Just ask questions because most of the people on here are the true experts. ;) I'm sorry you have had this experience with your doctor but join the club. BTW...I have never noticed that food will make Sjogren's worse, except continued ingestion of gluten. That does not mean you are ingesting any, either. Stay away from salty stuff, for obvious reasons. That is the killer for me. I eat very little salty foods.

Hang in there!
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#781920 Are All Gastro Dr's Inept?

Posted by Gemini on 20 March 2012 - 11:51 AM

No...you are not overreacting at all and I can completely identify with your experience, as many others on this forum will most likely chime in on! I could diagnose Celiac Disease better than most GI docs out there, without the endoscopy.
Rather pathetic, isn't it?

Always, always trust your inner voice with regards to Celiac because the GI doc population will try and keep you sick. There are a few great docs out there who get it but the VAST majority behave much in the manner yours did. I was patted on the head and told to go and "talk to someone" because there was nothing wrong with my stomach and my problems must be from anxiety and stress. You know, the crap they always do to women. I had pain so bad after eating, it felt like I was trying to digest broken glass, I was always underweight to the point many thought I had an eating disorder, I had just about every single symptom associated with full blown Celiac yet I was OK? I admit, this was a long time ago when I began to look for answers but come on!

Stay strictly gluten-free and forget what this turkey said to you. I don't even use a GI at all and now rarely see a doctor because I am healthy. I was eventually diagnosed but I figured it out and requested testing as I was down to 96 pounds by then..... :blink:

Welcome to our world and be thankful you have something YOU can control and not these knuckleheads! ;)
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#780655 Test For Gluten Intake

Posted by Gemini on 14 March 2012 - 12:56 PM

There is a blood test to check for gluten antibodies. If they are present, you are probably still ingesting gluten. If they are absent, that doesn't prove that you are not ingesting gluten.


In people with elevated IgA pre-diagnosis or who were diagnosed via blood work, the AGA IgA/IgG and DGP tests for dietary compliance are extremely reliable and can be trusted upon to prove dietary compliance. If a person is symptomatic and had negative testing on re-test, it most likely is another problem not related to gluten ingestion. It may not be so useful in those who do not have an official diagnosis, for obvious reasons. If these tests were not reliable for re-testing diagnosed Celiacs, they would not be used.
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#779676 Feeling Like There Is Not Much Light At The End Of The Tunnel...

Posted by Gemini on 09 March 2012 - 06:35 PM

I hate to tell you this but that trapped feeling could be the source of most of your issues. Stress has a profound effect on both autoimmunity and your resistance to illness. It can directly cause depression too - look up "learned helplessness". And of course your adrenals aren't working well in a chronic stress situation! Remember that too much cortisol is almost more likely than too little, and high cortisol directly causes depression. Unless you had an abnormal 24-hour salivary cortisol test, the herbs you are taking for adrenal fatigue (assuming that such a thing even exists which is questionable) may be pushing you in the wrong direction.

I am finding acupuncture helpful for depression. You could also try some of the milder remedies like 5-HTP or St. John's wort (either/or, not both, and not if you're on a prescription antidepressant). It's tremendously important to get enough B-complex in a high-stress situation becasue you will use up your reserves. If you tolerate citrus, have an orange a day for the natural vitamin C too. Make sure you are getting enough omega-3 fatty acids for proper immune function. A couple fish oil capsules a day can work wonders for your state of mind. Also ask your doctor about vitamin D testing as low D can make you feel worse and lower immune function.

Sometimes doing little things for yourself can make a difference. Buy flowers, have a nice soak in a hot epsom bath, get a massage (particularly helpful as it will release some endorphins), or splurge on something small that makes you happy. My favorite little treat is an expensive bar of super-fragrant soap for my morning shower.

You must exercise, no matter how tired you are. Get out of the house and take a 15 minute walk every day, ideally after dinner so it helps your digestion. If you crank up the pace and walk quickly or jog, you will get more endorphins into your system but I know how hard moving fast is when you are tired. Even a moderate paced walk will help.

While you do this, look at how you can get out of the trap. Remember that whenever God closes a door, he opens a window. It may be that the solution will present itself if you can treat yourself kindly and clear your head for a bit. :) If you can get clear of the stress you may find all these health problems melt away. (You wouldn't believe how sick some Ph.D. and medical students get - this is how I know about the effects of chronic stress on health.)


Oh.....this is very good, Skylark! I think all your suggestions work better than being over the top concerned about sensitivity and worrying about all the gluten in the world. You need to relax if you want to heal and absolutely exercise. I took my recovery up a few notches when I started weight training and cardio. I can go into a session feeling crappy and tired and feel like a different person when I am finished. It also really helps with digestion, as you said. You have to do the whole package and keep it up and before you know it, you start feeling much better.

As for med students and stress, one of my doctors popped with shingles, at the age of 28, because of those long hours as an intern. She said if the training doesn't kill you, you get to graduate. :blink:
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#779675 Feeling Like There Is Not Much Light At The End Of The Tunnel...

Posted by Gemini on 09 March 2012 - 06:23 PM

Also, I believe that yolo self-identifies as someone with a high sensitivity to gluten. She is relating her experience, and if the original poster is someone who also suffers from high sensitivity to gluten, this may be useful. Certainly, it's common on this board to suggest avoiding hair and skin products with gluten in them, which I thought was really out there when I first heard it. I also don't think it's outrageous to think that anybody with a gluten sensitivity could be glutened from laundering the clothes of someone who eats gluten. I've seen my husband covered in crumbs after eating a sandwich. So, yeah, if she is handling clothes and shaking crumbs out of them and especially if she has a high sensitivity to gluten than, yes, it's entirely possible.

I imagine as someone who self-identifies with high sensitivity to gluten, a reply like this on a message board devoted to gluten intolerance would make her feel very lonely, which is really sad and arguably unnecessary. I'm personally grateful that I'm not as sensitive as yolo.



I am a sensitive Celiac also...very, and I am careful as I have to be without becoming OCD about it. Yup, there is a lot of that going around and you cannot just keep blaming sensitivity. No one has to worry about being glutened from doing someone's laundry, unless you ingest clothing with gluten on it. We are straying way off topic from how this disease works. Anyone can certainly live their life anyway they want to but trying to sell this baloney on a reputable Celiac forum like this begs pointing out how far out that is. There are people new to this disease who may not be thinking clearly, due to gluten head fog and they might actually buy into this.
No need to create fear where there should be none.
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#779141 Feeling Like There Is Not Much Light At The End Of The Tunnel...

Posted by Gemini on 07 March 2012 - 11:15 AM

You also might want to see if you are meanwhile getting CC'd from trace gluten in your immediate environment. This could comparatively be a simpler answer to your problems. And perhaps the first thing to investigate. That could well be enough to make one depressed, since even CC gluten exposure shuts down the blood going through the carotid arteries to the brain roughly 30%--which then often causes depression. Anxiety is a close second. What that boils down to is to make sure everyone you are living with is not eating gluten, especially on the premises. You may even need to go so far as to have them change and shower before getting close with you. I have even gotten glutened from washing a bag of my brother's clothes for instance even though he wasn't even here on the premises. Don't you just love these autoimmune conditions!



I am sorry but I have to comment on this paragraph and sometimes it's really hard not to insult people, but I will try and word this as best I can....

Please post proof that gluten cc shuts down blood flow through the carotid arteries by 30%, leading to depression, or state that this is your opinion only because this is not what causes depression. Depression has many causes and not all of it is true depression but I have never read anything pertaining to this anywhere and think it bad advice to give.

Secondly, telling anyone they cannot eat gluten while you are on the premises or having them shower and change clothes before getting close is about as close to full blown anxiety as I have ever heard. Celiacs, no matter how sensitive, do not need to live in a bubble, unless they want to but it gets very lonely in the bubble. Saying you got glutened by a bag of your brothers clothes when he was absent is just ludicrous and not something the newly diagnosed need to worry about...ever, unless you are in the habit of eating clothes.

Most of us realize what Celiacs need to be careful of and there is no need to post stuff like this when someone is trying to figure out why they don't feel better. It's obvious the OP has other things going on which may be contributing to her health issues and she also hasn't been gluten-free for very long.
Unnecessary anxiety over things like this should be avoided. Oh, man....I give up..... :blink:
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#779109 Help! Is This Safe Or Not?

Posted by Gemini on 07 March 2012 - 08:11 AM

I should move to canada


You do not have to move to Canada to eat safely or be able to read labels. There is a big learning curve with this diet but, in time, you will figure out what you can safely consume. The vast majority of Celiacs can eat safely from companies with dedicated facilities without fear of cc or ingesting gluten at unsafe levels...or any gluten at all, as Peter stated. Both Canada and the US do a great job with this. I do not rely on government to decide what is safe for me to eat. I eat products from both Canada and the US without issue and I am extremely sensitive to trace amounts.

As for Rodney Ford, I take whatever he spews out with a huge grain of salt. Banning gluten worldwide? Ridiculous. Not everyone has a problem with gluten and I am not a control freak who wishes to deprive others of what I cannot eat myself. He's an alarmist. He also thinks everything is contaminated with gluten and if that were true, no one would heal. It's nonsense.

If you feel a product is safe, the give it a try. If you react, it doesn't always mean it was from gluten. Celiacs have sensitive guts and other food that does not contain any gluten may bother you for awhile. Do not despair and be patient...you will learn like everyone else.
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#778071 gluten-free Nail Polish Remover?

Posted by Gemini on 03 March 2012 - 02:50 PM

Hi Wintersong,
I don't know whether or not there could be gluten in nail polish remover. I only recently found out that there could be trace amounts of gluten in some nail polishes, so I decided to just stop using any for now.

I just wanted to encourage you that even though some people may not think that you have to be careful of topical gluten, I and my kids definitely do. I don't often post about it, because people who don't have to deal with it don't tend to understand and can make you feel like you are crazy - even on this board. But that is okay because they just haven't been there and can't relate on the same level at the time.

In my experience if something topical has gluten in it, it may not matter how careful you are about washing your hands. It only takes one moment of being distracted and touching say, your cup of water before you wash your hand and then after washing going back and touching the cup and then putting a bite of food in your mouth. Most Celiacs may not react to this very small trace amount of gluten, but I do, and every time I have second guessed myself and thought that I couldn't possibly react to that little then I inevitably get sick.

I say do what you feel you should do even if most celiacs don't think there is a need to. And if you find out any other info about the polish remover please let us all know! :)



I respectfully disagree with you on this one. Those of us who have mastered this diet and all the quirks
are not being careless in any way, regardless of what others may think. I do not have any problems with wheat allergies so topical gluten isn't a problem. There are things that are no-brainers like hand cream and lip products which every Celiac should use but many people are that careful and do not ingest gluten. How do I know? Complete resolution of symptoms and reversal of high antibody counts in all 4 of my autoimmune diseases. That is proof enough for me that I am doing things correctly. I am not saying that everyone can do this, especially kids because kids will never be able to remember all this until they are adults. But do not assume that those of us who can master this problem are not being careful. I take this disease very seriously and have had total success with the way I do things. As I stated, ingestion of nail polish remover
ingredients like acetone is far more serious than gluten ingestion. Acetone can cause kidney failure in anyone so should be avoided. I won't even use a nail salon that reeks of acetone because the vapors are not good either. In industry, acetone is used under a chemical hood and you go into salons and it's out on a table with no ventilation! :o
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#776714 Celiac Disease To Refractory Sprue

Posted by Gemini on 27 February 2012 - 07:48 AM

It looks like you already know the answer. You are doing the right thing. Keep going with the food/symptom journal. Eliminate things that make you sick.

The answer to the second part according to my experience is yes. Some of us who are less sensitive don't want to believe it, but my answer is yes.

Since you are noticing symptoms in response to certain foods, I would guess that it is a reaction and not lymphoma. My mother died of that disease so I have unfortunate experience with it's symptoms.


It is a very foolish person who mistakenly believes that symptoms and damage like this after a strict 10 year gluten-free diet could not be something more serious than low levels of gluten....which has not been established by any reputable Celiac group or intensive medical study. Lymphoma can present as Refractory and anyone that becomes this sick needs to seek medical attention with testing to make sure they are not even sicker than they think they are. They should not take any meds until they rule out the serious stuff. I think all of us can recall Bonnie's posts and what she is going through right now. The doctors blew her off and she was correct...she had a serious problem. Your insistence on everything being caused by low levels of gluten could cost someone dearly. Additional food intolerances should definitely be addressed but downplaying a serious relapse like this is not smart.
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#776103 Celiac Disease To Refractory Sprue

Posted by Gemini on 24 February 2012 - 08:44 PM

Hey all,

I've been gluten free since 1998 (endoscope biopsy) and my doc calls me his most 'compliant' celiac disease patient - I don't screw around w/it. Imagine my surprise when, after my last endoscope in Dec., 2011, my celiac disease has returned with a vengeance. In the past year I've lost 40 lbs, have severe diarrhea and a sudden onset of severe osteoporosis. My villi showed blunting and flattening. I've hated this diet from day 1 (before 1998 I never was very symptomatic except for severe itching) but have been very careful ever since. I can't cheat b/c i get very sick if I do. Now this. I've started a food journal and notice nausea when I eat BRM rice cereal and Udi bread. And recently my eyes have been red-rimmed, blood shot and itchy. I checked w/Almay (NOT the mascara I've been using) because their products are supposed to be hypo-allergenic. Only ONE of their mascara's is gluten free so I'm quite sure the mascara I'm currently using has gluten in it.

Could I be getting 'hidden gluten' in otherwise gluten-free products and my cosmetics (could that little gluten be causing my problems)? Any suggestions will be GREATLY appreciated. Thanks to all of you.



If you are that diligent with your diet, it may not be gluten at all that is causing your blunted villi.
An intolerance of cow's milk or soy protein can also flatten villi. Could it be possible that you have developed another intolerance along the way? That is very common with Celiac. I have also read that certain
intestinal infections can do the same. Have they done other testing along these lines to check?

I am sorry you are sick and hope you feel better soon.
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#775356 Gripe About The Media

Posted by Gemini on 22 February 2012 - 11:46 AM

I'm not trying to argue with you Lisa because I agree that there is so much more gluten-free food out there today than even a year ago but I get peeved at all the stuff labeled gluten free when it really isn't. It isn't tested, it is produced on shared equipment & so on & so forth. It's misleading. People keep sarong to me there are so many gluten-free products in the stores now (all excitedly) like it's really easy for me to find all kinds of stuff to eat. As if I don't have to eat any differently then I ever did; all I have to do is go to the grocery store & like magic I can walk out with everything I used to eat only now it's made gluten-free.
These people are getting this idea from all the hype as well as from all the "mislabeled" gluten-free products. We constantly read posts on here where someone has been glutened from a product that was supposedly gluten-free only it was cc'd so it isn't gluten-free.

And that was my venting for the day. Sometimes you just gotta do it!Posted Image


I respectfully share your need to vent away but my vent, and it's a small one, will somewhat counter yours! ;)

The notion that packaged gluten-free food is contaminated to such a great extent is just not true. If it were, the majority of Celiacs would not recover. There are definitely bad companies out there but just because one may choose to produce gluten-free foods in a non-dedicated facility, does not mean they contain gluten. Most companies test for compliance that I do business with and it's a standard I look for. Many source their ingredients well. As Lisa said, things were much different when I was diagnosed 7 years ago. I am grateful for the many small business people who strive to make our lives easier and more delicious. I am a very sensitive Celiac who almost ended up with a feeding tube because I was so sick at diagnosis, so I am one who take this whole diet very seriously. Most Celiacs have more than one intolerance, including myself, so reactions can happen for many reasons.

I don't find what most of the industry does misleading at all. I have yet to see a package that doesn't warn people about shared facilities or other ingredients that it may contain that may do us harm. I research a product I see before I buy it and have yet to have a problem from what I consume. I think the learning curve is large with Celiac and, until people really get to know how to do this, there will be mistakes. You also cannot believe everything you read about people who claim cc from a product. It does happen but not as often as many think. Most people do very well with the gluten free diet, which may include some processed foods. If you really believe that most gluten-free food is contaminated and you'll get sick from eating them ,you probably will whether there is gluten in them or not.
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