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Member Since 25 Aug 2006
Offline Last Active Nov 24 2014 07:05 PM

#919902 My Doctor Doesn't Know Anything About Celiac Disease...do I Even Have It?/

Posted by Gemini on 11 June 2014 - 12:27 PM

Really? From what I understood from my (admittedly limited research) and from speaking to several gastroenterologists and dieticians, the biopsy is still the gold standard. The blood results can have false positives, as well negative results when in fact the patient has Coeliac disease. Also aren't there numerous other conditions that can cause the same markers in the blood as celiac disease? There are also certain blood test for celiac disease that aren't recommended becasue they give unreliable results if you have an IgA defficiancy.


Admittedly, if you get positive blood work and going gluten free helps, then chances are you have celiac disease, but saying "you do not need a biopsy for diagnostic purposes" is a bit of a dangerous statement isn't?

Any time you ask a GI doctor, they are going to respond that you need a biopsy for diagnosis.  I think part of it is liability driven and the other part money.  In some circumstances, a person might need to move on to a biopsy if their blood work was inconclusive and came back as a weak positive and then the biopsy can be used as a back up diagnosis, if you are lucky enough that they hit the right spot and find damage.  I believe even a weak positive is indicative of Celiac but as you can see from reading this forum, some folks need more proof to convince them they have it and to stick to a strict gluten-free diet.  I can understand that if they aren't that familiar with the disease or the diagnosis criteria.  It is not always as clear cut as other diseases.


As far as I know, there are no other diseases that will elevate blood markers except the tTg. That can be elevated from other autoimmune diseases which are commonly seen with Celiac.  However, the DGP and EMA will only be positive from Celiac Disease. 


All of the IgA related testing in a Celiac panel will not be useful if a person has an IgA deficiency.  They could have the IgG related tests done but may choose to have the biopsy if these are elevated because the EMA test is IgA based and that is usually the clincher in a blood panel for Celiac Disease.




Taking all this into account, I stand behind my sytatement that for many people, a biopsy is not required for diagnosis.  Even Dr. Fasano, one of the leading researchers and Celiac physicians, has stated the same.  Celiac testing is not a one size, fits all kind of thing.  The bottom line for me is that if someone shows clear cut benefits from eating gluten free and regains their health, I stand behind them 100%. That is far better than having a negative biopsy and not going gluten free and becoming sicker and sicker.

I know relatives who had this happen and I am watching them suffer all because they believe a doctor unquestioningly.

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#919743 Safe Wines For Super- Sensitive People?

Posted by Gemini on 10 June 2014 - 11:49 AM


Here is a link to an article that talks about why vintners don't list ingredients. And grapes are often a crop that is doused heavily in pesticides and herbicides so if you react, it might even be to a residue of something toxic left on the grapes themselves

How about buying a good quality wine and drink it and stop worrying about what may or may not be lurking in it, courtesy of all those evil wine makers out to get us?  :blink:





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#919740 Marsh 1

Posted by Gemini on 10 June 2014 - 11:19 AM

Thanks for your post Peter. I suspect this is celiac disease too. A friend was diagnosed in her 50s and her villi will never fully recover. I don't want that to happen to me and am taking this very seriously. I also suspect my dad and my son have it too. My dad is now in a nursing home with dementia and we are awaiting the blood results for my 4 yr old son (whose eczema is starting to look like dermatitis herpetiformis.)

In reality, a person does not have to have 100% functioning,healed villi to be healthy.  There is overlap in the small intestine of areas that absorb different nutrients, meaning that if there is damage to one area that absorbs iron, there are other areas that absorb iron also. Is it optimal that you have the whole thing working well?  Sure...but it isn't necessary for health.  I was diagnosed in my mid 40's, after a whole lifetime of symptoms and I have healed well and am healthy now, with no deficiencies.


For the record, I would consider you a bonified Celiac.  Marsh 1 is the first stage of damage from Celiac. Having elevated lymphocytes is another big, red flag.......even though the medical profession usually won't give their blessing until you reach almost maximum damage   It's about as silly a logic as one can have.  No other disease state requires you to become that sick before they call it what it is.  Do they wait until a diabetic is in a coma before they acknowledge they have diabetes?  A big, fat no to that one!  You were lucky to catch the damage early before you go any further with it and I would stay on a strict gluten-free diet for life and stay healthy.  The anemia will go away once you do that.

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#919583 Disability

Posted by Gemini on 09 June 2014 - 11:54 AM

I am applying for SSI disability. 


I am not sure about your story but I have been sick my whole life, I am 37 now.  I have osteoarthritis in my spine, Grave's disease, severe weight loss >160 pounds and still dropping ( I weigh 150), I had chronic migraines ( 3-4 a week but haven't had any now in the last two months), severe vitamin deficiencies, and the list goes on.


I am just starting my process with the state and not sure if I need my doctor involved in the initial process or if I get him involved if I am turned down and need an appeal. I didn't have a job when I was diagnosed so therefore I didn't have the short term disability available to me. I have my complete medical history for them if they are interested in 1000 page books lol.  I can't imagine I would get turned.

You know, Beth, many of your symptoms from Celiac will abate and go away with time on the diet.  Many of us were at death's door and made a complete recovery, after many years of suffering. It is possible that you will recover well enough that you can work eventually.  It sounds like you need short term disability as opposed to SSI disability. Does SSI offer short term?  I do not know much about disability insurance because I recovered and work full time now, so never needed it.


It is not easy getting SSI and it should be that way because there are just too many people who abuse the system.  You know how it works......the ones who need it don't get it and the ones who should not qualify seem to find a way to do so. It can be a very unfair system, like many things. But Celiac Disease and it's related health problems rarely are permanent enough that you can't recover and be well.  I hope you have this outcome!

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#916804 This Is Just Beautiful!

Posted by Gemini on 20 May 2014 - 01:15 PM

Why is it that people go to these phenomenal restaurants and then have a cow when there is no bread?  REALLY?  You can get bread anywhere and I never, even before diagnosis, thought the bread basket important.  In fact, I never ate much from it because it wasted precious gut space that could be saved for the real food I went there for.


I just thought the demise of the bread basket funny and a real boon for us......no more flying crumbs that end up in MY gluten-free meal!  ^_^

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#916795 Who Needs A Dexa Scan?

Posted by Gemini on 20 May 2014 - 12:27 PM

The doctor just told me that DEXA scan may not be covered for every celiac.  She seemed unimpressed to hear a doctor told me my bone mass was nill when I was 25 years old.  I had 30+ years of celiac.  I will call my insurance and find out, but anyone know of general guidelines? 

Maybe they are unsure of what is covered now that our health system is being tampered with?  I have had 3 of these things myself and never had problem with coverage.  I think if you have an underlying condition that can damage your bone density, coverage is different than for those with normal bone density.  You have to ask your insurer....good luck!

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#916645 Gluten-Free Rice

Posted by Gemini on 19 May 2014 - 10:41 AM

As far as I know, duck is gluten free, depending on how they are served up!  ;)

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#916627 Gluten-Free Rice

Posted by Gemini on 19 May 2014 - 09:14 AM

For anyone doubting Lundberg's quality control and growing/harvesting/storage procedures, refer to their Farming Practices page and their Food Safety page, which I have provided links to.  If this isn't good enough, then I suggest sticking to a diet of fruits, veggies and protein because this is about as good as it gets!  :)





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#916044 Always Feel Like I'm Having A Reaction

Posted by Gemini on 14 May 2014 - 01:01 PM

This is not a matter of not understanding nutrition, but knowing that much of the population is suffering from vitamin deficiencies, whether they are gluten-free or not. Being gluten-free simply means that you lack access to the most commonly fortified food - wheat flour - and many gluten-free flours are not fortified at all. I'm fully aware that wheat, barley, and rye don't contain any vital nutrients that can't be found elsewhere, but I am also aware that there is a reason wheat has been fortified for more than 50 years despite that there aren't any regulations requiring it.

Edit: The 2002 study out of Sweden that found vitamin deficiencies in people who had been gluten free for 8-12 years. 


I would tend to disagree that much of the population suffers from vitamin deficiencies. That is alarmist stuff. Those with malabsorption issues would have to worry about it but if they learn about nutrition and where to get the vitamins and minerals needed, plus address their malabsorption problem, it should rectify itself.  If you eat a balanced diet and take appropriate supplements, most people should be good to go.  It really is all about learning how to eat.  Many people today have no clue what's in the food they eat and tend to gravitate towards low quality carbs. I am sure there are people who are vitamin deficient but I doubt its "much of the population". That is like saying most people should not eat gluten.  I don't buy into the idea that everyone has a problem with gluten, either.

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#916038 I'm Sure You Get Asked All The Time, But...lab Results

Posted by Gemini on 14 May 2014 - 12:34 PM

Ummmmmmmm......you have Celiac Disease and I want to welcome you to the club!  :)


Your tTg/IgA is way, way elevated and that correlates to intestinal damage.  Not to worry......mine was around 200 and I healed very well.


The EMA test (Endomysial) is positive and that test is very specific to Celiac, meaning only Celiac can cause a positive result.  It is a little odd that your total IgA was only 96 as your tTg is quite high.  I had a total count of over 700 on that when I was diagnosed but you cannot ignore the other 2 tests which are the biggies for celiac blood work.


Did they run a DGP?  That test is the one which tests for the reaction to gluten in the blood.  A positive on that means you are ingesting gluten and are reacting to it and it's the test that should be repeated at least once a year to make sure you are not ingesting any after you begin the diet for awhile.  It can take a year or more for your blood work to return to normal, if you follow the diet correctly.  Are you very symptomatic?


At this point, you can either just follow the diet or opt to have a biopsy but the biopsy is not needed for a diagnosis, with these results.  It is a matter of personal choice.  Congratulations on getting a diagnosis....now you can get your health back!  :)

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#915832 Always Feel Like I'm Having A Reaction

Posted by Gemini on 12 May 2014 - 11:25 AM

I'd get tested for vitamin deficiencies if you haven't already as they can cause you to feel really awful and can actually cause many of the problems you've described. To make matters worse, the deficiencies you may have had before going gluten-free from malabsorption would be different than those you get after, when you're skipping the fortified wheat or fortified milk products. Because supplements have their own problems, I would definitely get tested first (easy blood test) and only supplement those you need. 

But if you're getting glutened that frequently, you're probably taking risks that you shouldn't. Is it time to do more research into hidden sources of contamination, keep a food diary to narrow in on culprits (gluten or perhaps some other intolerance), or to stop eating out entirely? 

I can say that after I managed to stay 100% gluten-free for several months, my reactions to even minor contaminations eased up quite a bit. I can still tell you if a food, even those being sold as gluten-free, contains gluten within a few hours of eating it, but the reaction is a minor annoyance rather than the major inconvenience that it was in the first few months. So perhaps there is something in your routine that isn't as gluten-free as you thought it was that is keeping your autoimmune reaction amped up to full throttle.

No one should be having additional nutritional deficiencies after diagnosis, if you are eating a healthy diet.  You do not need fortified bread or milk to live well and be healthy.

I eat very little dairy because I am still sensitive to it after 9 years gluten-free and I have no deficiencies and am healthy.  Ditto for bread. There are some great choices out there for nutritionally sound, gluten-free bread so , as long as you aren't eating the white stuff, you should be fine.  I think it all boils down to lack of knowledge of nutrition, not from the inabiltiy to eat all that fortified crap.......and most of it is crap. 


To the OP.....you sound like you have additional food allergies or intolerances.  If you are being that careful with your diet, then it's probably not contamination....which everyone seems to always think it is.  Gluten does not lurk everywhere. And bananas cannot be confused with gluten by your body.....that cross reactive stuff is nonsense.  No valid scientific merit to it at all.  Bloating can be caused by parasites or H. Pylori....have you been tested for those conditions?


Keep it simple and plain and keep track of what you eat and the reaction you get.  That may help you to figure out what the problem is.  After 4 years gluten free, you should definitely feel better than this.  But if you have other food sensitivities/intolerances, that will keep you from feeling well.  I hope you feel better soon!

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#915678 How Do You Emotionally Deal With Setbacks?

Posted by Gemini on 10 May 2014 - 12:24 PM

This wasn't directed at me but nonetheless I found it great to read, thank you for writing it.

You're entirely welcome! It's always a pleasure to know I may have helped put someone in a better frame of mind. Life will always have it's challenges and the key is to find a way to deal with them and make them comfortable. It's the best way to fight back and win!
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#915357 How Do You Emotionally Deal With Setbacks?

Posted by Gemini on 07 May 2014 - 09:06 AM

Hi Gemini...Thank you for sharing your wisdom. I haven't felt any sensitivity to dairy...which I'm glad about. Which other foods did you have trouble with.

You've been gluten free for 9 years! Wow...how long after starting until you felt good on a regular basis? Do you still have blips? Is that just an inevitable part of the disease?

Thank you again!

I did very well on the gluten-free diet and then at the 2 year mark, that's when the dairy problem became evident.  I did not figure this out sooner because my gut was totally trashed at diagnosis so I probably didn't notice the fact that dairy was becoming a problem until I had healed a bit.  That's a fairly common thing to happen to us.  So...after 9 years, I am dairy lite.  I can tolerate small amounts but it is also cumulative with me.  No drinking milk (which I do not like anyway), no ice cream or puddings....things like that.  Don't even miss ice cream because who wants to live in the bathroom every time you eat some?  The cramping from it is pretty bad.  I still heven't gotten diary totally back so at this point, I have given up and am fine with that.  I would rather feel good.


I steadily felt better, with no major set backs in the beginning, because I ate a mainly whole foods diet with some bread and a few goodies thrown in because I was 20 pounds underweight when diagnosed.  I really needed to plump up.  But it was 3 years in total before the very last symptom disappeared.  My gut felt good but I had this leg pain in my right femur bone that was so bad, I was limping.  Had x-rays and there was no arthritis at all.  No one could explain it.  So, I did what I always do and just soldiered on until one day I woke up and reliazed my leg was not hurting anymore.  I think it might have been some neuro thing or vitamin deficiency that finally resolved because it has never returned.


I have to say that I rarely have blips at all anymore.  I am very careful, take no unnecessary chances when dining out and do that infrequently anyway.  It is a treat when we go out.  I hate getting glutened because I am one of those who erupt like a volcano.  :unsure:   The whole GI tract explodes and I get sick as a dog for about 1-2 days.  I am back to normal by day 4 but it wipes me out so I try to avoid it like the plague.  I really hate being sick.  But steadily, over time, I have gained 20 pounds and work out in the gym to develop those muscles that never had the chance to develop.  I actually have osteoporosis in my spine and osteopenia in my hip from Celiac, so that is the reason I weight train.


It is hard to believe it in the beginning of your Celiac life that you really can gain your health back and be comfortable and feel well but it does require time.  Of course, I do have other autoimmune problems from going so long without a diagnosis but I manage them well and do not take much medication. I am a firm believer in eating healthy, not cheating, exercise and don't forget to laugh often.  I do not let the medical world control or have too much input in what I do because I don't always believe they do the right things.  They tend to scare people. Yeah, so what, I have 4 AI diseases. I will never let that stop me or slow me down and just think positive. Even my doctor admits I am doing well and do a good job of managing things and really, with some education, anyone can achieve the same. Learn all you can, over time,so mistakes can be minimized.  It is not inevitable that you will feel badly more often than you feel good with Celiac.  Maybe in the beginning while you heal but not down the road.  Plus, after being gluten-free for so long, I am totally comfortable with this life and do not pine about foods I cannot eat. It is second nature to me and I would never go back.  You will feel this way too, I promise.  Go forward, not backward. If you are missing something food-wise, let us know because usually there is a good gluten-free version that someone will know about.  And, lastly, drink more tea.....I find that tea is so settling to the stomach.  The British have that right!  :)

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#915267 How Do You Emotionally Deal With Setbacks?

Posted by Gemini on 06 May 2014 - 11:29 AM

I'm wondering how everyone else deals emotionally with setbacks you encounter during your recovery?


I've been doing so well for over a month...yay!  I was diagnosed in January, had a rough beginning.  But for a little over a month was doing great.  I would talk about how good I was feeling, how I hadn't even realized how bad it had been until I saw all of the improvements,  I felt like I really got the label reading, cooking, etc. down.  I was exercising again.


And then last Wednesday I started feeling bad again.  By Thursday I was doing the run to the bathroom up to 15 times a day...exhausted...foggy...headache. All of the usual stuff.  I analyzed everything that I had eaten and realized that I had added 2 things into my eating that I hadn't had....almond flour and Ghiradelli chocolate chips.  I bought the chips because a recipe called for bittersweet and I didn't see any from Nestle.  Looking into it I see that they are made in a shared facility.  So, I guess I got too confident, didn't check something out and am suffering for it.  :(


I am having a really difficult time with this emotionally.  I feel mad and sad and all of that stuff.  The setbacks in this journey of celiac disease are so harsh and devastating.  They take such a toll.


How do you deal with it?  Get through it?



I highly doubt that there was any gluten in the chocolate chips.  Ghirardelli does an excellent job during manufacturing and I eat these same ones every time I make cookies and have never gotten sick once in 9 years gluten-free.  I am an extremely sensitive celiac also.  You have not been gluten-free for very long at all......and these chocolate chips are very rich so maybe your system just couldn't handle it right now.  You will find that you may have reactions in the beginning for awhile with foods that are on the rich side and do not contain gluten.  I consider Ghirardelli one of the safest companies out there for gluten free chocolate.  Plus, shared facility is different than shared lines.


I hope you feel better but do not sweat this at all.  It is not a setback, just a little blip in the big scheme of things.  You will continue to heal but have to accept that once in a while, something will not agree with you and it will take more than 4 months to feel tons better.  This is what we all go through and it will get better.  Now go and have another cuppa tea!  :)

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#913805 Severity Of Symptoms Linked To Genetic Profile?

Posted by Gemini on 24 April 2014 - 11:19 AM

3 COPIES?!?!?!?  Holy Moly!!!!!!!  :o


Too bad our "luck" at Celiac genetics couldn't be transferred to the lottery..... :lol:

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