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Gemini

Member Since 25 Aug 2006
Offline Last Active Yesterday, 12:47 PM
*****

#793172 What About Oats?

Posted by on 03 May 2012 - 08:31 PM

What do you guys do? I have read such mixed opinions about it. I just ate the best Nature's Valley Granola Bar and realized it was gluten free if she could have the oats. Do you guys eat them? My nutricionist told me that we could eat them if they were organic. Is there really that much cross contamination? I have read here that some of you can eat Quaker with no reaction. My DD doesn't react to gluten so I won't know if it bothers her or not. Do you steer clear of oats?


You will never know if you react to oats until you try them. Many Celiacs can tolerate oats just fine, including myself, and I am a diagnosed, extremely sensitive Celiac. I use Gifts of Nature oats, which I buy on-line.

Oats are also a big source of fiber and many people have trouble with fiber. It can cause the same reaction as a gluten reaction. Gas, bloating, etc. Were oats in your diet before diagnosis?

I always tell people to give it a try because you won't know until you do. Make sure they are certified gluten-free and do not use Quaker. The notion that all Celiacs should steer clear of oats is out dated.
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#792292 Done With This

Posted by on 30 April 2012 - 03:51 PM

This is a vent, feel sorry for myself post.
I was diagnosed with GERD, Barretts Esophagus and celiac disease about 6 weeks ago and went gluten and dairy free.
I started to feel better until last week when my Mom passed away after a long battle with cancer. it was so difficult to manage this diet with all of the company from out of town, being stressed, pasta dinners made by well meaning people, etc. I thought I did ok until Tuesday when I went to the diner. I asked the waitress if they had a gluten free menu and she said "you mean some kind of lunch specials?" I should have RAN!! Instead, I went "safe" and ordered an egg salad platter (on lettuce). It had coleslaw, egg salad and potato salad. I thought it was ok. I have been sick since. Woke up Wednesday morning violently ill and spent the whole day in the bathroom. Then I decided since I felt so disgusting anyway, that i'd just eat the orange gel rings (gluten free, but chocolate has lactose). Now it's Friday night and I am a mess. My stomach is crampy and bloated, I am in a fog and totally depressed. Now of course, I can't figure out if this is all stress related to my Mom or if it is a combination of both. Anyone want to share how long their sickness from being glutened lasts? This is my first time.
Anyway, this sucks and I am so mad that I have this stupid disease. It's making my life miserable. To make matters worse, I am going through the death of my Mom and have NO source of comfort. Can't eat, can't smoke (quit 2 months ago) and can't drink alcohol (Barrett's). UGH!!!!!
Thanks for the vent. It's impossible to explain to other people. I feel like they are all sick of hearing me talk about this. I am sick of listening to me.


You know, I am almost having an anxiety attack reading this post! Your Mum has passed away, you cannot drink, you quit smoking AND you have been glutened?!?!? :blink: :blink: If you were here, I'd give ya a BIG hug!
My deepest condolences on your Mother's loss because that must be a shock when it happens. I haven't had that happen yet but everyone goes through it so you are not alone in your grief.

I will make a tiny suggestion ....just a suggestion if things get too rough. I found that Nicorette Fast Melts work really well for calming effect when stressed, for former smokers. You may have gone 2 months but when stress hits like a brick, you can revert to old habits. If you want some relief, try them as they calm a person down quite well. I can't imagine what it must be like for you now except I smoked and I know how hard it can be. Coupled with everything else, it can be overwhelming. Nicorette offers a coupon for them on their website.

Find the time to do some things you enjoy and breathe deep. And remember....venting is good! :D
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#792181 Donating Blood

Posted by on 30 April 2012 - 07:18 AM

Gluten, or any food for that matter, does not necessarily get digested and metabolized before entering the blood stream. That is only what is supposed to happen. I have been shown partially digested fragments of food in my blood, under a microscope. That's from a leaky gut, with a lot of damage.


Joe....I am sorry you were taken so badly by whatever physician claims to have shown you this. This is complete and utter hogwash.

My sister works for a major hospital in Boston and has for close to 40 years. She has worked in the transplant unit and in most of the labs in the hospital so she has experience in these matters. She's a blood expert, or as close to one as it gets. Celiacs and those with multiple autoimmune issues are often refused blood donating because they are either anemic or they have too many autoimmune problems. I guess once you trip for more than 1 AI disease, they do not like to take your blood. That made sense to me because anyone with multiples (like myself), is usually putting a lot of effort into staying healthy and losing a pint of blood might affect that. It weakens you for a few days. You need to be robust to donate blood. I have never donated and never will be able to because I often don't make the weight requirement and I have 4 AI diseases.
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#791383 Teeth Cleaning At Dentist's

Posted by on 27 April 2012 - 08:01 AM

I guess I spoke too soon? I got a bit of a reaction to something? I got chest pains during the night and was a bit more off balance than usual yesterday. Mood swings too..just crabby in general. Not quite as bad as a glutening though? I'm wondering if it was the impression goo? She did 3 impressions, whereas the time before she only made one, and I had no reaction. Curious. :unsure:



Bubba's Mom.....you had the exact same experience I did when I had a reaction. They did multiple impressions for an implant and I had a bad reaction on the way home. I almost had to pull the car over and sit there by the side of the road, it was so pronounced. The next time they did an impression, they really were careful and I only needed one impression and suffered no reaction. You know what happens with that stuff....as it sits in your mouth hardening, you produce more saliva and start swallowing to keep from choking. If I get a big enough hit with gums, it mimics a gluten reaction.


This is when I extensively researched dental products. Spent a month calling reps and companies and got some useful information out of them. They are aware of this problem with gluten and all reps told me that it is not a component that is added to or used by dental product companies. They are heavy on the gums.....guar, xanthan and others I hadn't heard of before. No gluten. Flavorings are not a problem. In fact, most Celiac organizations will tell you that flavorings are becoming another Celiac myth. Of course any one with this disease should check their products but after 7 years gluten-free and having enough dental work done to send my dentists kids through college, :blink: , I have yet to find any product with gluten.
I had one reaction in 7 years and it was the gums. If you try to keep impressions to a minimum, then you may not react all the time when you go to the dentist. It is such a crap shoot, unfortunately.
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#789721 Why Can't My Body Handle Long Runs?

Posted by on 21 April 2012 - 08:01 PM

Hello! I am 28 and newly Celiac as of January, so I have been Gluten-Free and lactose free for almost three months. I have been iron deficient for over 10 years. I haven't felt 100% yet but definitely see the light at the end of the tunnel some days. One issue I wanted to bring up is muscle fatigue during exercise.

I was a college tennis player and would cramp up almost every match, no matter how much I trained/stretched, how many bananas I ate or hydrating drinks I drank prior to the match. I started training for my first half marathon in january and just finished a 10 mile race for training purposes. Every time I push myself hard for a run or if the run is longer than 6 miles, I would be completely out of commission the rest of the day. I slept the whole rest of the day after the 10 mile race last weekend and still felt 'off' the next day. Primary symptoms: muscle fatigue, dehydrated, tight muscles and just overall tired. I am very active, play on a tennis league and volleyball league during the week on top of working full time and running or walking after work prior to my leagues. I don't always react as extreme as noted above but I definitely do not feel as in shape as I should be with all of my exercising.

My vitamins and minerals all came back WNL. I take Juice Plus, B12 supplement and benefiber daily on top of a well-balanced diet. Wondering if anyone else has any of my same concerns and issues and if you have a solution. Also, any thoughts on malabsorption? Please let me know if I am not making sense, I may not be expressing my questions well. I have many... Thanks for reading!



I think that to expect to be able to run long distance or exercise hard after only 3-4 months of being gluten-free is unrealistic. It doesn't matter what vitamin or mineral levels are because it takes the body a long while to fully recuperate to the level where you can stress it and bounce back like a 28 year old should. I know that's hard to fully comprehend but it's what most Celiacs experience.

I went many years before the diagnosis and it took me 5 years into recovery before I could start a really hard exercise program and be able to do the routines. I weight train and do cardio. It will come back but
you have been suffering from malabsorption and that depletes you of storage energy. I can only say eat well but don't deprive yourself of carbs or be afraid to include some processed gluten-free foods. If you exercise and play hard, you'll need the carbs. There may be foods that you find don't agree with you and if so, wait awhile before trying to introduce them again. You will have to be patient and don't over do it but keep at it routinely and slowly, you will regain your ability to recover faster. I'm doing things I could have never done a few years ago so I know you'll get there also. From the sounds of it, you are pretty active already!

One more thing.....Celiacs are often dehydrated and this can really prevent recovery from happening normally.
You know how bad a work-out can be if you aren't hydrated.....that can cause muscle problems, as you stated in your post. It takes awhile for that to correct itself but in the meantime..... keep slugging back the water or Gatorade, although I hate the stuff myself!

Good luck!
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#788814 The Gluten Free Label

Posted by on 18 April 2012 - 06:25 PM

I'm seeing more and more products specifically labeled "gluten free," which is a good thing for us I am led to assume.

How exactly does a product get to have the "gluten free" label? I see this label in several forms...the "certified gluten-free" label, the words "gluten free" above a bar code, some Giant Eagle soups labeled "gluten free" right above the words "product of Canada."


Let me clarify.....most of the companies that label their products as "certified" gluten free source their ingredients from suppliers to make sure they are gluten free as can be and they test voluntarily. They are not required by law to do so but many, many companies do test their products. Certified gluten free, from a dedicated facility, is as good as it gets for a Celiac. Is it perfect? No, but since the vast majority of people heal fine incorporating some degree of processed gluten-free food into their diet, it's safe to say most are getting it right. Some test to lower levels than 20ppms and will usually volunteer that information upon request.

I've seen "gluten free" with the wheat symbol, and the same symbol that says "naturally gluten free."


From my experience, labels with the wheat symbol usually are naturally gluten free or have no added gluten ingredients. It might be prudent to look at the label to see if it is manufactured with anything else that may contain wheat. It usually states so on the label, in the allergen statement.

Some products say gluten free on their main label, like Bio-Tech protein powder that is "wheat and gluten free." Isn't that redundant?


Wheat free and gluten free are not the same thing. Gluten free cannot contain barley or rye and sometimes oats, if those oats are not certified gluten-free. Wheat free only may contain these other things, usually barley.

Are all these products tested before they can label them like that? In another thread I asked about Choceur chocolates I found at Aldi's here (I was super thrilled...missing chocolate) but someone replied that cross-contamination could still be an issue.

I thought "Well that's crazy!" Then what IS safe to eat then if something can be labeled "gluten free" but could be cross-contaminated.

I'm confused now.


No, not everything is tested and it isn't necessary for everything to be tested. Label reading takes time to learn but everyone does.
If a product in question is manufactured in the same facilty as wheat/gluten products, then you may need to call the manufacturer to question them about their practices. You may end up needing to avoid these places but maybe not. Anything naturally gluten free usually is not a problem but there will be exceptions. You can't go wrong with certified gluten-free.....the vast majority of celiacs can consume these prodcuts with no problems.

Just keep asking questions if you are unsure but get used to calling manufacturers for awhile, at least in the beginning.
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#786271 Aveeno Skin Care

Posted by on 09 April 2012 - 11:07 AM

For those of you who wonder if topical can cause a reaction, YES!
My daughter has some scars on her arm, if we ever question anything,
all she has to do is put the product on her arm and bingo! It inflames
with red bumps within an hour or so. I bought some Organic Baby Care
by Aveeno, oat was the last ingredient! What a reaction! Huge welts!
So, we now add cosmetics to our list of no-nos!


Of course topicals can cause a reaction....an allergic reaction. You would have to eat the Aveeno product or get some into your mouth and swallow for that to be classified as a Celiac reaction. (Intolerance)

Are we clear now? ;)
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#785477 Cocoa Powder

Posted by on 05 April 2012 - 12:08 PM

I don't eat dairy and soy but I've never worried about cross contamination from them. Whatever the case, I'm definitely not eating Ghirardelli again.


If you don't eat dairy or soy and then ingest something with these as a possible cc, then that could be your answer. I would hate anyone to think that Ghirardelli contains gluten, because it does not. Check this out: Cocoa Powder

You will have to check which ones are gluten-free but I have never seen cocoa powder that contains gluten.
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#783610 Has Anyone Had Any Success With Tso/whipworm And/or Hookworm Therapy?

Posted by on 28 March 2012 - 09:22 AM

That's a really sad statement. You'd rather carry around a dirty life sucking parasite in your gut then avoid gluten. That's just sad.


I agree! Far from being a biased answer, this IS what you said it is....sad. Anyone who thinks that introducing a parasite into your gut so you can eat a bagel again, has bigger problems than Celiac Disease. Why would anyone be so attached to a piece of bread? :blink:
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#783567 According To Recent Data, Gluten-Free Doesn't Seem To Be Enough

Posted by 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 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 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 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 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 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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