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Member Since 25 Aug 2006
Offline Last Active Yesterday, 02:18 PM

#801703 Contamination On Food Boxes

Posted by on 08 June 2012 - 11:08 AM

Gemini, Do you know what IMHO means??? After suffering with undiagnosed Celiac & DH for 50 plus years, I can call it LOVE.... Some here may not respect my IMHO either, but so be it... Some here haven't suffered enough either... I say, Spread the Love to Family Members...

If you are going to offer up your IMHO, then be prepared to receive comments. Are you saying that just because you throw that in, I can't make a comment back? Poppycock! Again...new Celiacs need to know this is not an issue. There is no love of family if they are trying to manipulate and guilt another family member into eating "their way". Don't confuse love with control freak behavior.
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#801629 Contamination On Food Boxes

Posted by on 08 June 2012 - 07:47 AM

IMHO, Show some LOVE for family members and honor their requests... Gluten most likely isn't any good for you either...

Talk about guilting people into being overly compliant when there isn't any issue! This has nothing to do with love and not everyone has a problem with gluten. If the food is being carried in a bag from the grocery store, there is no issue at all.
Have some common sense people! <_<
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#798378 Levels Of Celiac?

Posted by on 25 May 2012 - 02:10 PM

I was told that her thyroid happened first and it was because her dad is type 1 diabetic and they go hand in hand. Auto-immune diseases usually do. Every time I mention that she(age 7) doesn't have symptoms people here will say "isn't her thryoid enough". No, it really isn't. My husband is type 1 diabetic and he isn't celiac. Supposidly they go together, too. His endo says going gluten free will not help him at all. She was tested when they discovered the thyroid issue and was negative for celiacs at age 7...neg in every way. It did not present until age 11 and even then it was just a random blood test. She for sure had Hashimotos first. There are lots of people who have Hashis that do not have celiac...like her pediatrician. She has been Hashis for over 20 years until she finally had hers removed. She doesn't have celiac and told me that gluten will not affect my daughters thyroid. In fact, since going Gluten Free, my daughters antibodies have actually gone up on her thyroid.

Maybe I can clarify things for you as what your doctors told you isn't completely true...and I readily admit I have little use for the AMA.

Think of Celiac as the Mother Ship of autoimmune diseases. It creates all this inflammation in your body over time and you don't know it yet. You have symptoms or maybe not but the damage is being done. It affects every single organ in your body if left undiagnosed long enough. So.....all this inflammation is going on and its not just your small intestine that is being attacked.
The immune system starts to look for other organs to attack as you have been blood tested and the doctors say you don't have it so you keep on eating gluten. The thyroid is one of the first places your immune system goes to for the secondary attack. I don't know why but it does. The pancreas is the next biggest attack site. This is why Hashi's and Type 1 diabetes are the 2 biggest diseases associated with Celiac. (Not quite what your doctor told you).

Your daughter did not just trigger for Celiac, it was most likely the other way around. The tests are notoriously incorrect in children because it takes a long time to register on blood work, with the testing that's available today. Her Hashi's most likely developed as a result of having undiagnosed Celiac. I would bet your husband has it also. How do I know all this? I was diagnosed with Hashi's at 32 and suffered with undiagnosed Celiac until I nearly died from it at 46. I also developed Sjogren's Syndrome and Reynaud's Syndrome along the way because the idiots in the white coats missed the Celiac in me for years. With the symptoms I had suffered with my entire life, I figure I triggered as a very young child. Lots and lots of damage.

Your daughters antibody levels for Hashi's may continue to go up until she heals her gut and even then it can take years for the antibodies to normalize for the thyroid. My thyroid antibody levels were 1200 a year before the Celiac diagnosis and it took me 6 years to get them back in the normal range and it wouldn't have happened if I hadn't gone gluten free. My brother has Type 1 diabetes and he is in denial and believes his doctors BS telling him he doesn't have it. He has lots of symptoms they blame on his diabetes. And you know what? My brother is dying from kidney disease and all the other diseases he keeps acquiring because he is still eating gluten. He won't live to see 60 years old.

You sound like you may be in a bit of denial about how far reaching Celiac is. That is normal because there is a lot to learn about this and its not easy to absorb all this information.
However, if you continue to believe what your doctors are telling you, your husband may end up a very sick man, very soon. Celiac is the root cause of many health issues today in many people and they keep getting the runaround from the medical profession. If you really want solid information that won't steer you in the wrong direction, stay with this board. Be very wary what the AMA tells you because they really don't get it yet. Anyone with Type 1 diabetes that has had a blood relative diagnosed with Celiac is probably looking at the same diagnosis. Your daughter got the gene from either you, your husband or both of you. I would strongly suggest gene testing for hubby and yourself to see where it came from.

As for your daughter's pediatrician.....she has Hashi's and it got so bad she had it removed surgically? She claims gluten will not affect your daughter's thyroid. You know what I have to say about that? :o :blink: Horse-pucky!

I do wish your family well but you are getting some very bad advice from your doctors. Show me a Celiac who doesn't!
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#796074 Airborne Gluten?

Posted by on 16 May 2012 - 12:05 PM

I think this question is an interesting one because I found myself having a "gluten attack" after standing in line at Tim Horton's to get a gift card - I didn't even drink a coffee! I wondered if I could get be exposed from just SMELLING all those yummy treats. I also wondered if I was paranoid and manifesting the symptoms. Then, last weekend a mini-donut kitchen was set up at our local grocery store....by the time I was at the cashier with my cart of groceries, I was light headed, and feeling nauseous. It passed after I got outside, and had a bottle of water. All I did was SMELL the bakeries. I think I'm either SUPER sensitive, or something else. :huh:

No, you are not super sensitive. This is pretty common with Celiacs and something I have had happen. It's not a gluten hit but more of a psychosomatic reaction to the smell of wheat based food. I get nauseous when I go down the bread isle in a mainstream grocery store because of the smell of all that wheaty processed food. Blech. That's why I shop at Whole Foods....no offending smells there. I am a very sensitive Celiac but I don't think that has anything to do with it. Many people experience this. I really hate it when Dunkin' Donuts is making the donuts....what a gross smell.
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#795999 Soft Bones

Posted by on 16 May 2012 - 07:37 AM

I broke my ankle square dancing last month. Broke both the tibia and fibula right above the ankle. Just great. All I did was walk backwards, lose my balance and there goes the ankle. Very embarrassing. Lost balance due to a recent MS attack. Surgeon operated and told my sister I had soft bones. He had trouble getting the screws to stay in. I see him on Thursday and am interested to see what he says about the relation between my soft bones and celiac.

I spent tonight doing some research. Rather depressing since it is as plain as the nose on my face now that I should have a problem. I have unknowingly battled Celiac for about 9 years. I was just diagnosed 2 years ago and immediately started getting my life back but I am extremely sensitive to all traces of gluten. I have been on HRT since the mid-1980s and then due to a breast cancer scare went off of the estrogen cold turkey last August. I am pretty well thru menopause, having the privilege of going thru it twice, once at age 30 after having my uterus & ovaries removed and then again when my body remembered I was approaching 50. Celiac, menopause, stopping estrogen, low thyroid all adds up to high risk of soft bones. I'll find out later which disease I have.

I was walking about 4 miles almost every day. I square dance. I have MS, which I have had since as a child but was not diagnosed until 22 years ago. The MS attack I just had was brought on my stress of an ex-husband......court problems again. First time in 22 years I have had an attack.

I take extra calcium supplements, eat lots of greek yogurt, am almost a health food nut with being so good on my celiac. I'm very healthy if it wasn't for my MS which is more of a hindrance than anything unless this inactivity does a job on me. But, not if I can help it.

Why am I writing this long post? Because anyone out there reading a post on soft bones either, have already had this, or am worried they may have it or develop it. I would love any information anyone has learned that would be beneficial when I approach my doctor in my treatment. We Celiacs have special needs that can easily be overlooked. That is why we have forums such as this. Any info on recovery, diet, things to beware of, etc etc, I would really appreciate. Also any past topics i have missed.

Thank you.

I also have osteoporosis/osteopenia from years of undiagnosed Celiac and my preferred course of treatment has been to do weight training and core exercises, with the help of a personal trainer. The bone meds they like to push on people do not build bone from the inside of the bone....just stops the break down of old bone and deposits new bone on the outside. It can also cause stomach problems, which we do not need, and be a problem especially for Celiacs if absorption is not optimal.

I don't know if you would be able to do this after healing of your ankle but weight training and core exercises might really benefit you from the MS standpoint also. It would make your muscles stronger and that aids balance. I am also post menopausal by 8 years and I stopped BRHT a while back because it wasn't really helping with the hot flashes all that much. Estrogen is important to bone generation but it is not impossible to build bone without it....just a little harder and it takes longer. I am sorry you have a broken ankle and hope you have a speedy recovery but please consider weight training if possible for you. It puts you in a good mental state also.

A woman has to weigh a minimum of 126 pounds to just build bone on your own. If you weigh less than that, you HAVE to exercise or you will continue to lose bone. For a man, the weight is 150 pounds. I will never reach 126 pounds so I have no option but to go to the gym. Not a bad treatment as I always feel so good after a work-out.

BTW...I also have Hashi's thyroid disease so we are very similar. It's an uphill battle but I don't like to lose!
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#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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