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Member Since 25 Aug 2006
Offline Last Active Today, 07:58 AM

#814393 Losing Hope...

Posted by on 28 July 2012 - 12:56 PM

You know what? People like Irish are the reason I keep coming back here..

I've read through this thread 3 times thinking I'd missed something. Good grief...every bit of advice/opinion she gave was done well...

I have to say this... I'm a grown woman and it's getting old the "walking on eggshells" that has to take place in here. And, you're probably not going to like this either but... I think some of the moderators are just a little too quick to chastise in here. I've yet to see anything that "crazy" and I've seen so many "interventions"... I can only speak for myself, but I'd prefer to come in here knowing I'm going to be treated like a rational adult. It really can be very insulting... I guess we will see if I'm allowed back?

You are very observant for someone who hasn't been here long..... ;)
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#814391 Losing Hope...

Posted by on 28 July 2012 - 12:53 PM

Oh for cryin out loud.....Irish means well, she always mean well. She has nothing but everyones best interest at heart.
The way I see it is if gluten makes you sick, don't eat it! Corn makes me sick as hell and I didn't need some doctor to tell me not to eat it.

Well said, GFreeMO! People do get passionate about Celiac when they nearly die from it. I know that road well.
It's time people realize they do not have to live and die by what a doctor says. If you wait around for a diagnosis to come, you may end up so sick, recovery won't happen. There are huge limitations with the medical community when it comes to chronic disease and much of what they do is money driven these days. There is no money in Celiac disease, people. You recover on your own, through dietary changes and it takes a long time.
No pills, no surgery, no treatments. Just food and they don't have control over the food. Start to trust your own instincts on this and you'll get better. Listen to Irish......she's a smart lady!
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#814191 Losing Hope...

Posted by on 27 July 2012 - 10:19 AM

The diagnostic *potential* of endoscopy/biopsy (the aversion was to gluten, right? Not biopsy too as phrased) is the same whether the OP reglutens or not. The accuracy is affected but it's not at all the impossibility of "will NOT". Every time someone isn't already great after a month gluten-free, there are, imo, valid comments such as "it takes time for your intestines to heal, the damage didn't happen overnight either".
An endoscopy could be hugely worthwhile despite x weeks gluten-free.

If kswan08 is having a colonoscopy on Aug 16 anyway, an endoscopy should be done at the same time imo. (Isn't the biopsy part a given once celiac is in the picture?)
With long-term GI issues I'd want my GI to take a good long look around. Mine found Barrett's Esophagus and some other .. ..argh don't remember well enough. Point is, I don't know why anyone'd discourage an endoscopy.

Well, Tom....let me enlighten you on why some people would refuse an endo. When I was diagnosed, I was so violently ill, I could not hold food down and was beyond nauseous so doing any tests that would involve putting a scope down your throat was really not an option. I also have Sjogren's Syndrome and have severe dry mouth and throat. That can make doing an endo dicey. I failed every diagnostic test by huge numbers, have a double DQ2 Celiac gene and when I went gluten free, the explosive, watery Big D completely stopped after 3 days on the diet. Pretty miraculous considering I was down to 97 pounds and as dehydrated as you get. I had my diagnosis.

As I have said before, if a person does not recover fully on the gluten-free diet or develops other symptoms that warrant a scoping, so be it. But for those of us who recovered well, albeit over a period of time, and feel well to this day and have had a complete resolution of symptoms, the scope is not necessary....unless you want to have one.
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#813963 Xanthan Gum Original Source

Posted by on 26 July 2012 - 01:04 PM

From my research xanthan gum gum can come from soy, corn or seaweed. It most often comes from soy but not listed as an ingredient. The only way to find out is by calling the manufacturer for the info. I have a soy issue and found this out the hard way. Be very diligent in checking out all ingredients and don't assume they are gluten or soy free if it is hidden in ingredients. Good luck and read all labels carefully!

Xanthan gum is safe for Celiacs. If it were derived from wheat, I believe it would have to be listed in parenthesis next to the xanthan gum. I have never seen xanthan gum listed as a questionable ingredient in any Celiac based literature, including Celiac organizations. Xanthan gum can have a laxative effect on people and this is what can confuse people into thinking they have ingested gluten. It is not a cause for worry, from a gluten point of view.
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#813890 Losing Hope...

Posted by on 26 July 2012 - 06:49 AM

I have never heard of a Pot roast with "injected solutions" that contain wheat. This is a disturbing thought....can you tell us what product this was.... so we will know? thanks!

I have also never heard of any beef being injected with a solution and I have been gluten-free for 7 years. I think that anyone new to this should not be worried about beef in general. Unless you are buying something marinated, fresh beef is not a concern.
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#813292 Misdiagnosed?

Posted by on 24 July 2012 - 09:13 AM

Wow. Ok, first of all, sorry that my way of dealing with things have made you so passionate. I am NOT a doctor. And while I feel in many ways that my doctors are WRONG, I still seek their professional help because quite frankly, I have not been diagnosed with Celiac. There isn't much of a history in my family for it, my blood panel came back negative, so what other choice do I have then to try their advice first? Which is what I have done. When I didn't get positive results from their methods, then I sought my own guidance. And to be perfectly honest, I don't trust myself 100% to make a self diagnosis that includes limiting my dietary needs to a non existent state for the rest of my life.

The whole point of coming to this message board and posting, was because I didn't know what to think of my situation. I needed positive reinforcement that my instincts were correct. That it IS in fact a gluten issue. I don't need negative rants about your unhappiness with people who are just trying to figure out what's wrong with them. I get enough negativity from my doctors. I don't need it from someone else.

And FYI, the only real way in my opinion to make a true assessment about my gluten intolerance, was to take it out of my diet, reintroduce it and see how I react. Well, big shocker, it wasnt good. That tells me, that now regardless of what my doctors say, there is a gluten issue and I will not be returning it to my diet. But thank you for kicking me more while I'm down. I hope you feel better after posting.

You should try and be less sensitive about advice given because the advice given was good. It is hard for those of us who see people suffer and doubt themselves to such a degree. I guess it's because we have been programmed to believe that unless a doctor says we have it, we don't have it, which is nonsense because most people don't take the time to learn that testing for autoimmune problems is a total crap shoot as of today. They have not developed testing that is absolute and that may never happen.

I want to ask you what you meant by the statement that you wanted to make absolutely sure that you had a problem before "limiting my dietary needs to a non-existent state for the rest of my life? Really? Does that mean what I think it means? Do you really think we live a boring life with no food excitement just because we are gluten-free? If you didn't mean that, then I apologize to you but if that's what you mean, that's pure hogwash. This diet has a learning curve, that's it. There has only been one food that I have had to forget about, that I could not replace gluten free. One. Revamping your diet for better health is not rocket science and it returned me from the dead....almost literally. Going gluten-free is not a big deal, once you educate yourself on how to do it correctly. Really...I wouldn't lie to you! ;)

The poster did not kick you in the jimmies, just expressed frustration that I feel daily when reading this forum. There is too much whining going on and if that much effort was put into learning the diet and getting better, then people would be far better off. There are many who are going to jump all over me but go ahead.....I can handle anything, I'm a recovered Celiac. Not to sound too harsh but it does eat at me today....I am going upstairs to my office to sign a card for our young secretary, who lost her 53 year old mother to cancer on Saturday. Her mother was my age and my heart aches for her family. Ya know, folks, this is far better than cancer and it's almost as deadly, for some. But we have the power to make it better ourselves and I am so thankful for that.

I really wish you a healthier tomorrow but don't beat up on someone who speaks sense. Once you are gluten-free and feel 100% better, you'll feel the same way too. You'll wonder why you didn't go gluten-free sooner!
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#812072 Update....... Confused More Than Ever

Posted by on 19 July 2012 - 07:35 AM

Thanks tom, but that question is not good enough. Yes I feel better but that does not mean I have celiac. I may just have gluten intolerance which is fine, but then what's causing the intestinal damage? That's my dilemma. I'm not happy to take a chance.

You had a positive biopsy, your sister is a diagnosed Celiac, and you have had a positive response to the diet....explain to me why this hasn't convinced you? You could keep eating gluten for another biopsy down the road but are you willing to trash your intestines completely and develop other AI diseases to convince your doctor to baptize you as an official Celiac?

Having negative blood work and a positive biopsy is all too common for a Celiac. It sounds like you are being swayed by a doctor who does not know how to diagnose Celiac Disease. From what you have described, you have Celiac. I hope you do the right thing and stay gluten free!
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#812071 Walmart's Produce

Posted by on 19 July 2012 - 07:26 AM

I have had a gluten reaction and muscle testing suggested it was due to a coating on plums (organic!) also. According to the FDA, apparently gluten is allowed in some fresh produce waxes or resins... see http://www.fda.gov/F...m111487.htm#q14 for more info...


There is no gluten in wax on fruits or veggies....period. This is one of those nonsense things that just will not die. Muscle testing falls into that category also. Useless information. The FDA are no authority on gluten and their information is wrong. If there was any merit to it, Celiac organizations would be warning people about the wax and they never have. This is right up there with the notion that all gluten free labeled foods are contaminated or fruits and veggies can "uptake" imaginary gluten from the soil.

Relax, folks...fruits and veggies are safe, unless you have a specific allergy to them.
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#811603 Gluten Free Diet Cured? Type 1 Diabetes

Posted by on 17 July 2012 - 06:58 AM

This is somewhat ridiculous to put "according to Dr Vikki Peterson" as the subtitle when it's actually her comments on an article re: gluten-free published in the British Medical Journal.

"Published just days ago in the British Medical Journal (June 21, 2012) from authors Sildorf SM,Fredheim S, Svensson J,and Buschard K out of Copenhagen University Hospital ,the article was titled “Remission without insulin therapy on gluten-free diet in a 6-year old boy with type 1 diabetes mellitus”."

Gemini, you gotta admit it's less than fair to attack the Dr for this w/out following the link where it's obvious it wasn't her patient, her conclusion, her publication or her original report.

As far as the Drs qualifications, who are ppl to turn to when their GP & GI aren't helping or are even spouting the utter ignorance re celiac as seen quoted on the forum?

The facility she & her husband run has been helping many patients who for one reason or another have fallen through the cracks of mainstream medicine.
As far as I can see, the only argument against them has to start w/ denying that many celiacs/NCGIs (or all food intolerances in general) are failed by current mainstream specialist-based DX flowcharts. Or believing that Drs saying "IBS, take a daily pill forever" have done their job though the patient's symptoms increase & widen over time.

They're not trying to replace GPs & GIs. But when a patient isn't satisfied w/ their GP/GI, there is another option if you live in Silicon Valley. (Btw they do have 3 MDs on staff)

Tom.....I did read the link and it doesn't matter whether Dr. Vikki is just posting research articles or whether this is her idea. Read the last few paragraphs....she agrees completely with this notion and she's a chiropractor. People don't go to chiro's to get treatment for diabetes. You cannot cure Type 1 diabetes that is full blown. My brother is a Type 1 so I am familiar with this disease. You may be able to manage it better if you are a diagnosed Celiac or are aware that you have a problem with gluten and change your diet. But it isn't going to go away and to give people this idea is wrong.

As to what do people do when they are failed by their doctors? You do what I did.....become very proactive about it. I got really sick....I mean, close to not making it. I was told I should seek psychiatric help for my problems. I figured it out from researching on the internet and then went to my thyroid doctor and told her to test me for Celiac because my PCP was a moron. That's when I was diagnosed. I also diagnosed my other AI diseases, after going to a new doctor and asking her to test for them, after detailing my symptoms. At that point, I had the positive Celiac diagnosis so they took me seriously. Education is bliss. People have to start taking their health into their own hands and demanding results because, apparently, the medical profession has neither the time nor the brains to do so. It really is sad but it's true. When it comes to chronic disease in any country, doctors just don't get it because many of the diseases are caused by food issues and they don't go there. You almost have to become the detective but you know your body best, they don't. I actually don't go to a doctor that much because I have recovered so well, I don't need them all the time. And I am doing better than many people who march off to the doctor every year. Go figure..... ;)
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#810330 Starving After Starting Thyroid Meds

Posted by on 11 July 2012 - 10:35 AM

I know I shouldn't have stopped my meds but I was so unbelievably frustrated :( I started compounded thyroid about 3 weeks ago. Some days I feel pretty good (not necessarily as good as I think I should feel) and others I feel like this is never going to end :( The wellness dr did not test my thyroid. I showed him results from past drs and actually got my gp to prescribe the thyroid med. My gp wants to test me soon to check my levels. I want to up my meds myself cos I'm starting to feel tired a lot again. :( It's to the point of we're it's almost impossible to wake up when I have to work in the morning. I keep looking for reasons to go home or call in. The wellness dr has me eating better but also wants me eating like 6 times a day. When all I want to do is sleep it makes it difficult to cram all that food in. I find myself craving sugar (fruit). I ate a rice cake with honey almond butter before bed last night and it put me in a sleep coma. :( It just seems like every time I start to feel better something screws it up and it's so hard keeping track of all of this.

This is my number one symptom when my T3 or T4 is low. It's a major effort to get my butt out of bed but I have a job and have to. I have been doing this for over 20 years and the Celiac is easy compared to regulating my Hashi's thyroid. I have periods of time when all is well and then BAM! I have to re-adjust my dosage. It usually occurs when I am very stressed and I am going through this again right now, after a period of wellness on that front.

I am doing 2 moves this year, downsizing into a condo but am living in an apartment while the condo is being built. In May, I started feeling draggy as all hell and knew it was my thyroid. MY TSH was, as usual, suppressed and very low but I never use that number. My T3 was great but the T4 was in the very low normal range. I take Nature-throid, which has both. Soooooo........I started on an additional supplement of T4 (Levoxyl) at 50 mcg. Feeling better now but why the hell does this keep having to happen? It's a major pain in the butt and I am paranoid about my thyroid getting too low as I popped with shingles last time it got very low. :o I never want to repeat that experience again!

I am having my hormone levels tested, which can influence thyroid production. My adrenals are a bit screwy as my cortisol is backwards....I have low cortisol in the morning and it gets higher as the day goes on. That explains why I have always been a night owl. You can't really fix that as supplementing in the morning will only make me not sleep at night. It is such a dance to balance all of it and I find that every 3 years or so, I need a thyroid tune-up. I so feel your frustration..... :(
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#808282 Kraft And Cross-Contamination O.0

Posted by on 03 July 2012 - 10:36 AM

It was gemini's response I didn't like in the first place, not yours skylark.

Oh...this begs a response......sorry if you don't like common sense and reality, cavernio, but guess what? The food world does not revolve around you.
To even imply that most of the people on this forum aren't careful enough with their diets is an ignorant thing to whine about. Just because someone eats a Kraft product does not mean they are taking undue chances with their gluten-free diet so you should not make such loose comments. You need to learn about this diet and how to read a label. Take advice from others in the know without getting snippy about it and either learn what we are talking about OR eat only whole foods and certified gluten free. Your experience with Celiac is not any different than mine or many others. We all got extremely ill, some nearly died, but we all are recovering well or recovered and many eat Kraft products and lived to tell about it.
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#808222 Kraft And Cross-Contamination O.0

Posted by on 03 July 2012 - 08:22 AM

"A small number of Kraft Foods products are labeled as “gluten-free” according to the proposed definition by the Food and Drug Administration (FDA). These are: Crystal Light, Kool-Aid and Tang powdered soft drinks and some Back to Nature rice crackers. We take this claim seriously and for such products, we are assured there is no unintentional contact with gluten during every step of the agricultural growing, transportation and manufacturing process. You might notice that many additional Kraft Foods products may have ingredient statements that do not list a source of gluten, but without the extremely specialized procedures in place to diligently validate gluten purity, we do not label the finished product as gluten-free. In this way, we are very serious and thorough when labeling products as gluten-free."

I think this is a pretty fair statement of fact about their products and one that Celiac's need to learn to interpret. This is basically a legal disclaimer so they won't get sued. They clearly label their products as gluten free and those with no gluten-free label, but with no listed gluten ingredients to worry about, are most probably safe for the vast majority of Celiacs out there. You are never going to get a written guarantee on food, with good reason.
If you don't trust that as being good enough, then stick to fruits and veggies to eat, and no processed foods whatsoever. Unless you have additional food allergies or intolerances, this is probably not necessary. I have never gotten sick from any Kraft product I have used and I am an extremely sensitive Celiac.

I'm really upset by this :-( I thought I had a big brand name I could trust, where I could read the label and be worry free if the ingredients were safe, for products I could find at any grocery store where I live.

No need to be upset or worry...it takes time to learn the ropes and understand labels. The vast majority of foods that are labeled or have no gluten ingredients are safe to consume but unless a company tests for gluten after every batch, there will never be any ultimate guarantee. If you want that level of testing, be prepared for that $50.00 loaf of bread. Testing is expensive and not necessary all the time.
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#805057 Is Modified Food Starch Ok?

Posted by on 20 June 2012 - 03:24 PM

1.Modified food starch, in the United States. We have had this conversation before. I wish I had saved the thread. It is possible that the modified food starch can contain gluten, although it is unlikely, because of a loophole in the labeling laws for the USDA vs. the FDA. The rules differ for the 2 govt. agencies. I have had people jumping up and down my throat on this in the past, I imagine they will do it in the future, I do not care, I invite them to do my chores for me while I'm down on the floor in agony from eating a supposedly "safe" "gluten free" product with modified food starch which was not clearly labeled and sourced. Remember some of your base ingredients are imported from other countries. Also, your corn starch could have been harvested with equipment that was used on wheat,rye or barley, stored in bins that had wheat,rye, or barley, or was processed in facilities which process wheat,rye, or barley, because that particular corn starch was not dedicated to a gluten free manufacturing and consumer line. The allergy rules (USA, year 2012) say wheat must be called, it ignores barley.

Yes, we have had this conversation before and I think that Peter and Lisa explained things pretty clearly. Anything imported from other countries would still fall under the labeling laws for the US so if you can read a label, you should be able to figure it out. That doesn't apply to newbies but you are only confusing things and scaring unnecessarily. I don't know anyone who has become sick from modified food starch and most Celiacs who have done their homework know this is a safe product when purchased in the US or Canada. I have also never heard of barley being used in modified food starch. I guess it could happen because anything is possible in life but the odds are pretty slim that anyone has to worry about barley being in food starch.

I have bought 50 lb sacks of pure grain for animal feeds for over 25 years, I've never had a sack of one single grain, that didn't have at least a few kernels of something ELSE completely different in it, which is something I keep in mind and don't mind sharing. This also varies. It's roulette, most of the time you're lucky, sometimes you won't be. Some human food manufacturing companies are very good with their labels and source purity, some are not.

If food was that much of a crap shoot, then no Celiac would ever recover. I get what you are saying but I think you have to just research things well and not be overly worried about it as that in itself will keep you sick....and afraid to eat.

2. Hairspray status, USA

November 2011 list of hairspray products which do and do not contain gluten: http://www.(Company Name Removed - They Spammed This Forum and are Banned).com/gluten-free-hairspray/

Alright, that is not helpful in not being able to direct people to the link at c------diva.

Some Paul Mitchell's, most Chi's hairsprays are gluten free. Sebastian is gluten-free, some Bed Heads, the L'oreal non aerosol line, Mega, Elnet Satin, Vivepro are gluten free. Tresemme will label gluten and some are gluten-free. Dove is gluten free and will label. Rave is gluten free, will label, and Suave is gluten-free and will label. Both Rave and Dove reps said to watch for "cetyl alcohol" which can be derived from gluten grains. VO5 is gluten free but does not guarantee free from trace amounts from manufacturing. Garnier Fructis is gluten free, Aubrey Organics is gluten free, Head Organics and Finesse is gluten free.

That explains why I have never found wheat in hairspray. I use the better products which do not contain wheat. It is sort of like going to a high end restaurant vs. a fast food joint....you can guess which one you'll have better luck at getting a truly gluten-free meal. I can only imagine that if you inhale any hairspray on a regular basis, I would be more worried about the chemicals you are ingesting vs. any wheat in the spray.
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#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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