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Gemini

Member Since 25 Aug 2006
Offline Last Active Jan 30 2015 02:04 PM
*****

#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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#780655 Test For Gluten Intake

Posted by 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 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 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 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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