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Member Since 03 Jan 2008
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#857798 Am I Just A Wuss? (Staying Home After Gluten/soy/whateverings)

Posted by on 10 March 2013 - 11:49 AM

Why do the rest of us stay? To help. If sometimes our messages seem like "tough love", so be it.

But at some point, you all have to say "it is what it is", so I have celiac, big freakin deal. 

We're still here. Some of our members are battling cancer and some have passed away, but they never gave in to the whining or the "poor me" stuff for very long. They just live--one day at a time.

It's all any of us can do anyway.


Well said, IH.  I thought it needed repeating.  We are still here.  And we are still here in the hopes that we can help others to be still here, living life.  We are not here to be the wicked witches of the west.  We are not here because we like arguing or because we feel sorry for ourselves.  We are here to try to give you whatever help you need.  If you don't like the message, feel free to disregard it.  But don't complain because it was offered -- you did after all come here seeking it, even if it wasn't the message you hoped for. 

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#857549 Home Test Kit - Positive Result...at Last!

Posted by on 08 March 2013 - 01:03 PM

My GP has now agreed to blood test me (like he did my daughter when she came out with a strong positive TTG last week) and I didn't have to 'demand' it either. I'm not sure where you are, but in the UK it seems that the TTG and IGA testing is the standard initial test along with total serum IGA to test for deficiencies. If the serum levels are normal and the TTG is positive  then it's onto the gastro constultant for endos etc. If not, the GP will then run the endomysial test if celiac is strongly suspected. But I am neither a doctor nor a path lab chemist/expert so I can't comment on whether this is correct or not. Seeing as the NHS use the TTG test widely as a first indicator, I will assume, for now, they know what they're doing and that it is in line with whatever UK guideline have been recommended. Guess it's different in different countries.

Hello, Celias Mum.  Yes, the testing protocols are different wherever you go.  Some doctors in the US use only the total IgA and tTG for screening purposes also, which I feel is a little unfortunate, since you CAN be celiac and not test positive on the tTG.  On the panel that toworrynottoworry listed, it is necessary only to be positive on one of those celiac tests for the diagnosis to be entertained and a biopsy performed, and often that one positive is not the tTG, which is the reason the entire panel is recommended.  The DGP (deamidated gliadin peptide) is a much newer test, is very specific for celiac, and tends to pick up the disease at a much earlier stage than the tTG.  Some of our posters have been testing positive only on the DGP IgG, not IgA, and have turned out to be celiac.  The medical profession has been slow to uptake this new test and many doctors are not even familiar with it, let alone knowing its significance.


As you know, your daughter's disease had to be inherited, and it sounds like you are the likely candidate for this role. :)   For this reason, if you cannot get your doctor to also run the DGP, and if your tTG should turn up negative, I agree with the other posters that you should definitely try the gluten free diet anyway for a good three months, because the testing process is definitely not infallible.  Hopefully, the indications from the Biocard are heading you in the right direction. :)


Best wishes to both you and your daughter.

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#856661 The What's For Dinner Tonight Chat

Posted by on 02 March 2013 - 01:02 PM

WoooHooo, Lisa-gal.  Way to GO!!!!  So happy for you.  Now don't go overdoin' them lentils, restrain yourself!!!!  The way to keep 'em is by giving them away ^_^   Jig-a-jig-jig!!!!  :D

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#856396 Just Diagnosed After 8 Years Of Symptoms - Scared Of Gi Cancer And Lymphoma

Posted by on 28 February 2013 - 05:05 PM

You have been diagnosed relatively early.  Many posters on here are not diagnosed until their 50's or 60's :)   I do not see or hear cancer knocking at your door - that is for those who ignore the diagnosis and continue on their errant way.  Please do not be scared of cancer.  Now that you are diagnosed any additional risk (and it is not that high in the first place) will drop right back down pretty soon to that of the average population.  But it's okay to let it be a motivator to keep the gluten out of our diet :)


Welcome to the board and be sure to ask any questions you may have.  A good place to start your reading is Newbie Info 101   - there is a lot of helpful information in there.  I will come back and give you a link.  Here it is:



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#856333 Please Shed Some Insight On This Blood Test

Posted by on 28 February 2013 - 12:25 PM

I share your frustration that they ran only this one test :(   They did not even run the total serum IgA which would tell us if you make normal quantities of IgA and that therefore IgA testing can be relied upon.  Doctors are in love with the tTG but it can be negative in people who will test positive on other celiac blood tests like the DGP (a newer test, and more sensitive and more specific for the development of celiac, i.e., shows results earlier and damage less likely to be caused by something else if positive).  The EMA is also a very specific test for celiac but they don't normally run this unless the tTG is positive.  But your tTG IgA will not be positive if you do not produce normal quantities of IgA - so it's Catch 22.  Is there any chance of talking whoever ordered your test to also order:


Total Serum IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

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#856151 Is My Self Diagnosis Correct?

Posted by on 27 February 2013 - 02:21 PM

It has been scientifically proven that after a period of not eating gluten, the gluten-intolerant body mounts a stronger response to gluten when it is reintroduced.  This is why it is recommended that people get tested before they stop eating gluten, because you need to be still eating gluten to be tested, and it is usually too painful for people to go back on gluten once they stop.

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#856046 A Day Trip (Sometimes I Need To Tell A Story)

Posted by on 26 February 2013 - 07:28 PM

An Outing Story  (every now and then I feel a need to tell a story - some of you may too, and I would be delighted to read them)

Hubs and I went on a Probus-organized bus trip yesterday (amazing what old folks will do for 'entertainment' :) )  Bus was driven by one of the members (supposed to be a 'pro' ) and it turned out to be a used-import bus from Japan which was brought down from Napier after the earthquake (probably millions of kilometers in Tokyo, with very narrow () no-armrest, no-contour seats (think cozy but not comfortable), certainly no luxury coach and under most circumstances something you would not want to travel more than five miles in.  We had to cross State Highway 1, main north-south road (two-lane, uncontrolled crossing) and I said to hubs - even though we were going to the mountains (foothills)  - that this was probably the most dangerous part of the trip.  Wrong!!!!

"Tom" had not driven this bus before and about halfway through the trip finally got familiar with the gearbox.  But it turned out Tom did not know where he was going.  Neither did Paul, who had organized the trip.  I did, because that's where I grew up (the only reason I decided to go on the trip - well, also hubs didn't want to go by himself.)  So we missed the first place we were going to visit but I shouted out and he braked hard and the car following (bus wasn't big enough for all) nearly slammed into the rear of us :rolleyes: .  Tom started backing up and the other driver hastened!!! to get out of his way.  We did about a ten-point turn with the bus on the narrow two-lane road and eventually made our destination for the traditional Kiwi "feed" called morning tea.  Scones with whipped cream and raspberry jam, other cream cakes, pikelets (I dunno what all because I just passed by and had some OJ).

After a tour of the gardens and a little talk about the farm (I filled in some gaps) it was on to the next "run" as sheep stations are called in these parts, for lunch.  I said to hubs, I hope Paul gets his act together because we are almost there, but no so I hollered as loud as I can holler these days with my impaired voice, and Tom slammed on the brakes again, with same result as last time :blink: , although this time he could back up a little and make it.  We were directed first into the house for lunch!!! out on the lawn (about 1 hr. after morning tea.)  Hubs had said he was going to "wing" the food and eat what he felt was safe, but I made us a couple of ham and swiss filled rolls because I was definitely not "winging it".  Turns out lunch on offer was  - make-your-own filled rolls with ham and swiss (only ours were better - and we we did supplement with a few of their extras).  So I was able to successfully follow gluten-free eating rule three - when taking food to a venue, try to match what is going to be served :D .  WIN!! for me.  Later, trays of cake and chocolate rumballs were presented, but we had our own little goodies, equally as nice.

I know the couple who have the "run", having babysat the husband (aged 6) on a summer vacation at a beachhouse, along with his siblings, when I was about 15, while his mom bonded with a new baby, and having contributed to a book about the area his wife co-edited a few years ago.  He hates to be reminded of this, but during this vacation he said he wanted to tell me something, and I leaned in and he whispered, "I'm going to marry you one day, you sweet little thing!"  :ph34r:  Ever the ladies' man, Bruce, although you look at him now, this sinewy, rangy man with the grey hair (now where did that come from?, I don't have that).  

So the daughter of the house who is now 23 and gave up her banking career to come home and learn the ropes on the farm because neither of her brothers were interested in working that hard, acts as our tour guide - on the bus - as we set off on our farm tour of Middle Rock.  Fortunately, Bruce has roaded the entire farm (approx 3,000 acres of rolling tussock hill country) with a road the bus was able to handle with reasonable aplomb.  Charlotte is a kick-in-the-pants, a natural stand-up comedienne, (never destined to work in a bank!) and had us in stiches with her stories, but was very informative at the same time.  I learned some things from her that I hadn't learned as a child because we left there when I was nine.  Like they don't get rid of all the matagouri (very thorny shrub about 3-4 feet high and wide) on their property because it provides good protection from snow for ewes when they are lambing (the snow forms in drifts around it but leaves hollows where there is no snow and new grass for the mom and her baby, and that the kind of sheep they farm (corriedales, developed in New Zealand, which my dad tended to favor), while not as likely to twin or triplet, do not need assistance in lambing and actually make a nest to give birth in (amongst the matagouri).

Charlotte said she is often asked why their run is named "Middle Rock", and she says it's because their dad says that every time he digs a post hole for a fence, there is a rock right in the middle of it.  She says her dad has spent his life making roads, planting trees, digging fence postholes, and picking stones and rocks.  But he also has some fun on the side.  Another story.  Her mom and dad went to the A&P show (think a very ag County Fair) and followed their separate interests, agreeing to meet for lunch at a certain time.  Lynn's idea of time is not as good as Bruce's, so by the time Lynn showed up 15 minutes late, Bruce had already bought a microlite plane!!!.  For some time after that her dad used to vanish in the evenings, no one knew where, until one day they unexpectedly came upon a hangar built on a far corner of the property with a small landing strip!

Someone asks a question about water and she directs Tom off the road into a paddock and we end up facing a steep gulley! where we can see the headwaters of the Selwyn River, and later on she tells us that a very controversial new irrigation scheme is planning a canal through their property (I had wondered where it was going to go) and because there is a hill blocking it's way they are going to build a dam and create a reservoir in the valley she was pointing out which will practically divide their farm in half.  Given the benefits of the water she seemed pretty philosophical about this.  Tom got the bus out of there without rolling it.

We left Middle Rock and did a quick visit to Terrace Downs Resort (all these properties are part of the land my dad used to manage and which I roamed as a child) which is now a golf course and lodges, resort-owned rentals, private houses (lots owned by Americans and Brits) and the resort now Japanese-owned but Kiwi-managed.  Because he wanted a good education for his children, the owner personally funds an additional teacher at what used to be our one-room school which now has 26 children and two teachers.  On the way out of the parking area Tom cut things a bit short and we ended up tearing a bit of sheet metal off the bus on a rock.  Hey, not to worry!

Next stop, The Point, for afternoon tea (no, they hadn't eaten enough yet!).  Lynn was trying to tell them where to go and I said to her, Don't worry, I know where it is.  So I got Tom to go straight ahead instead of turning right where he wanted to go, and then I told him to turn left on the road at the top of the rise.  He says, No, this doesn't look right, we're on the wrong road!!! until he sees the sign that says "The Point".  Another brake slamming, backing up job and we arrive at one of the old historic farm houses dating to 1860, which survived the earthquake even without foundations, and has not been modernized much beyond electricity and plumbing.  Here I used to go ice skating on the pond for school physical education, and managed to fall IN the pond on VJ-day for those of you old enough to know what that is.  More tea, more home baking, enough to fatten an army, lovely lawns and grounds, tennis court, swimming pool - I used to think as a kid that everyone lived this way and why didn't we??  Well, we did have the magnificent mountain views.

By the time we left The Point we were running an hour and a half late (I thought the program was mighty ambitious) and it was decided to cross State Highway 1 at a place where there were traffic lights.  But our route took us through the epicenter of the first big quake and they were undertaking the major (final) road rebuild and we got detoured.  After several other detours, much backseat driving from the rear of the bus, peoples consulting their GPS, a call to Tom's boss that the bus he had 'borrowed' was going to be late getting back, and being unable to cross the highway at any lights, we took yet another detour by turning left onto the highway (yes, that's right - proper side of the road) and finally ended up in a place everyone recognized.  Phew!!!  And home, unglutened, unbowed, unharmed (except for the bus and Tom's ego).

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#855981 Question For People With Casein Intolerance As Well As Celiac...

Posted by on 26 February 2013 - 12:51 PM

Lactaid works for some people and not others.  It initially worked for me, but eventually I had to eliminate milk, cream, ice cream, frozen yogurt, while still being able to tolerate those foods which were cultured (yogurt), high fat / low lactose (butter) or where the lactose was consumed by enzymes (cheese).  I can now eat all dairy again.

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#855703 Got The Other Three Kid's Tests Back

Posted by on 24 February 2013 - 10:11 PM

You are right to take things slow instead of rushing in.  So what would I do??


Definitely eliminate the gluten.

Eliminate the dyes and preservatives (you seem to have been able to do this before, right? :) )

Keep your two-year-old away frorm peanuts and eggs.  Are your other children responsible enough to make sure she does not get them if they are in the house?  If not.... we don't have peanuts in the house, but have plenty of other nuts, especially almonds.  Hubs has peanut butter and maybe your other kids could too, but you can get other nut butters, especially almond, although it is more expensive.  This ball is in your court for sure.


See how this works.  Since we don't have biopsies we don't know if there is intestinal damage.  Even if the tTG is negative it is possible to have that damage, and if there is damage that person will probably have problems digesting the lactose in milk.  Again, there are plenty of other milks around, rice probably being the cheapest, but avoid Rice Dream.  Sometimes hard cheeses are tolerated when milk and ice cream aren't.  You can get ice creams made from coconut milk.  You can also get Lactaid milk which contains the enzyme for digesting it which works for some.  Dairy, if it seems to be a problem, is something you can play around with a bit, testing if it is lactose or casein that is the problem.


I would personally keep some other grains in to start with but again this is your choice.  You can start with them and then remove if you do not see any progress after a couple of months.  Remember that not everyone heals at the same rate so while one or more are improving it could take another longer to get to that point and you can't assume that it's because of another food intolerance; it could just be rate of healing.  You may notice changes within a couple of weeks but I would wait a couple of months.  Then, so long as you are seeing improvements, keep going.  If you are not progressing then it's time for change.  Some grains allows you the option of rice and pasta and expands everyone's diet if they are tolerated.  Maybe just start with rice at first since it is usually the best tolerated.  Tinkyada pasta is just rice flour.  And I think Pamela's baking mix is just rice, potato, tapioca starches. 


Sometimes with the allergy blood tests, because the body is in a hyperreactive state it reacts to things it otherwise would not.  But legumes (beans, peas, etc) are a possible allergen - I found out they were for me - but don't go looking for allergens all over the place yet.  You want to keep as many foods available as possible, is the way I see it.  If you can get everyone stable on no gluten, no dyes, no preservatives, and if necessary, no dairy, then you can try one food at a time with everyone, only one new thing a week.  I am having visualizations of six notebooks of foods and symptoms dancing around in my head and I can see why you have been stressed out :rolleyes:  :D  Fortunately, you have a pretty good idea by now of what works from your previous trials so you are not starting from scratch.


Several posters on the forum have reported that Zyrtec helps them a lot with everything, not just nasal problems.  Don't start them both at once and don't start Zyrtec right away if you decide to try it, so you can evaluate whether it makes a difference when you add it in.


Just remember, from now on you are the boss, what you say goes.  So you can take back control of your life and your children's lives.  :D


I hope you all improve rapidly and that this plan proves to be a winner for you.  I wish you all the best of health.

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#855295 Suspected Ms, Can It Just Be Celiac. Please Help.

Posted by on 21 February 2013 - 10:31 PM

Welcome to the board, Emmpra.  Although it seems like it is your girlfriend who needs to be here :unsure:   She has been very careless with her health.  But it is not my duty to lecture on the known hazards of a celiac continuing to consume gluten products.


It is my humble opinion that the chances of her symptoms being caused by gluten are actually quite high.  My understanding is that the spinal tap is the defining test between gluten ataxia and MS, especially if some of them have abated in the past when she has refrained from gluten consumption.    As you point out, the unidentified bright objects in the brain can be caused by either, and do not usually dissipate.  Many of her other symptoms may well totally resolve on a gluten free diet, although the neurological symptoms take much longer to do so than the GI symptoms and there is no guarantee of complete resolution.


It is not unusual for neurologists to not make a connection between MS-type symptoms and celiac, although how they manage to avoid knowing this I do not understand.  We have a poster by the name of ravenwoodglass.  If you search her name in the members section and read her personal history of attempting to be diagnosed you will find much correlation with what your girlfriend has experienced, as far as ignorance of the symptoms of neurological celiac.


Good luck to you both on getting to the root of these symptoms, and I hope your girlfriend has learned the eating-gluten-free lesson.  It is not a part-time job -- it is a full-on, full-time job and one she owes herself if she wishes to be well.

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#855100 We Need To Start A Thread On Stupid Stuff Doctors Say!

Posted by on 20 February 2013 - 08:13 PM

I wonder how often one is diagnosed with cancer and is given the diagnosis, given handouts or told to "go check the internet"


With cancer they are going to make more money off you, with celiac they are not.  :ph34r:

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#854137 Staying In Hotels

Posted by on 15 February 2013 - 08:52 PM

I am sorry you have been having a run of bad luck. Sometimes in life $*[t happens. But it is not normal for it to happen constantly. I remember when I was in driver's ed and they showed a video of what could happen while you were driving - dogs running out, kids chasing tennis balls, redlight runners, pedestrians not looking where they were going, blind little old ladies in walking frames popping up from nowhere. I said to the instructor, Boy, I hope driving really isn't like this or no one would do it. He reassured me that no, this was a lifetime's experiences all thrown together in one video, and that most days none of these things would happen while you were driving.

This is what is bothering me - that you are worrying about a lifetime's gluten horror stories happening on your trip through the supermarket, or your stay at a hotel. Ninety-nine point nine things that you are talking about will probably not happen to you. Not to say that they all can't, but most of them if they do there is precious little you can do about them, and worrying about them is going to drive you both crazy in the meantime. You must do what a normally prudent person with your level of sensitivity would do, which is what I do. The rest is up to chance and God or whatever higher power you respect. There is life to be lived, even for those who must avoid gluten, and so long as you follow normal precautions you should be just fine.
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#854131 The Song Name Game

Posted by on 15 February 2013 - 08:30 PM

They Call the Wind Maria - The Kingston Trio (one of my first albums :wub: )
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#854127 Staying In Hotels

Posted by on 15 February 2013 - 08:16 PM

If you do some reading here: http://www.aseanfood...es/11017454.pdf - you will find that gluten molecules vary greatly in size, but are some of the largest molecules there are. So the zonulin in our guts must open the gates pretty wide to let them through :huh: into the bloodstream. This must be why they do not pass through the epidermis; i.e., you can only get a skin reaction from contact, not a systemic reaction.

I stay at the Holiday Inn Express at SFO every year on our way through and have never had a problem with them, bed or breakfast.
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#854111 Staying In Hotels

Posted by on 15 February 2013 - 06:53 PM

After all the rinsing cycles that a washer goes through, I do not believe there is any potential gluten powder residue on the bed linen to worry about. Remember that hotels have to wash their sheets to a standard that even those who have allergic skin reactions to various products will not react to their bed linen. I have always luxuriated in hotel bed linens because everthing is so beautifully cleaned and pressed and presented. And I do not stuff pillowcases or sheets into my mouth or chew on them, so even if there were something left in the sheets, merely touching them would not be a problem for me. And we are not even sure that their detergent contains gluten in the first place. If I may speak candidly, there is a difference between taking sensible precautions to avoid gluten, and letting it dominate one's life. We can all dream up scenarios where gluten might potentially jump out at us, but these chances are highly unlikely -- in fact, I have to wrack my brains to come up with things that might potentially get me that I am not anticipating. I certainly do not go looking in crevices to see if gluten might be lurking there. And I am very careful what I put in my mouth. And I am very careful about what I inhale because I have very bad lungs and breathing problems. But having never been glutened by a hotel bed before, but having been bedbugged twice by accommodations, I personally would be much more concerned about bedbugs than gluten.
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