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Member Since 03 Jan 2008
Offline Last Active Private

#865577 Could The Seizure Have Caused The Celiac's?

Posted by on 27 April 2013 - 12:35 PM

Hello and welcome to the forum.


With all these people including docs talking celiac disease, have they ever done the blood tests on your youngest daughter?


As for the seizure being the 'trigger' for celiac, seizures can be part of the celiac picture as an expression of celiac - a neurological manifestation (this kind of presentation is not at all unusual).  Blood testing is pretty simple although not always reliable in infants, but worth a shot.  I must say I have never heard of puberty in  an infant and don't know what to make of that.

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#865488 Is This What Is Wrong With Me?

Posted by on 26 April 2013 - 11:13 PM

Adding to Lisa's questions, when he did the colonoscopy, did he also do the endoscopy (down your throat into the small intestine) and is that what he said looked like you had celiac but then the biopsy came back negative?  Or did just the blood tests come back negaative?


Welcome to the board, and you will get used to all our nosey questions :)

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#865130 Not Sure What To Do.

Posted by on 24 April 2013 - 02:06 PM


Or Vodka could work too.  Tater vodka of course.  Certainly can help with falling asleep at night if you are hurting, that's for sure.


Nope, don't "do" taters.  Not even in wodka, just to be sure.  Go for the burn with scotch :D   Nothing like a good sear to seal in the juices.

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#865104 My Negative Blood Test Results.

Posted by on 24 April 2013 - 12:17 PM

The first test, the Immunoglobulin A (IgA), S, is the control test to make sure that you manufacture what is considered a normal amount of antibodies, and you do.


The second test is the doctors' preferred test, because it measures the antibodies that are damaging tissue in the small intestine (tissue Transglutaminase).  There usually needs to be quite a bit of damage for this test to be positive.


There is a newer, more sensitive test with great specificity for celiac, called the DGP (deamidated gliadin peptide) which can pick up celiac disease earlier then the tTG.  Not too many doctors have a lot of experience with this test.  If I were you I would ask to have this test run.  I hope you are still eating gluten? 

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#864757 Do You Think I Have Celiac?

Posted by on 22 April 2013 - 08:06 PM

Thanks. I guess I just wish I didn't have to eat gluten free. People hate going out to eat with me since we can only go to certain places. It really stinks. :(


And my sister wasn't officially diagnosed with Celiac, though.


We all think it would be nice if we didn't have to eat gluten free :)  but that's not the reality.  We have to deal with what is as much as possible, not what we wish it would be. 


It is not necessary for all celiac tests to be positive ~~ one is enough.  The tests all exist because not all of them will pick it up; some catch the disease earlier than others, there are a lot of variables involved in celiac testing.  If they were all required to be positive very few people would be diagnosed. 


And you do have another autoimmune disease... I think it is probably time to accept it for what it is :)   Now, if you noticed no improvement gluten free (totally) after three months, THEN you could re-evaluate.

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#864599 I Believe This Guy... Gluten Free May Not Be Enough

Posted by on 21 April 2013 - 09:32 PM

I'm glad you've found the Specific Carbodhdrate Diet helpful for you.  Many of our posters have had to go this far or sometimes even further to cope with all their food intolerances and heal their leaky guts and SIBO.  Some use the GAPS diet also.  But you would be surprised how many on this board do not eat any grains, or have had to go without grains for a long period of time in order to heal.  Healing from celiac is a voyage of self-discovery, learning how to get in touch with your body and give it what it needs, and removing what it doesn't like. 

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#864482 Can't Trust So Called Gluten Free Menu Items Anymore

Posted by on 21 April 2013 - 02:33 AM

I have given up on restaurants completely, with the exception of two restaurants. I've noticed as everyone else on here has, that restaurants will really say anything to sell their food, but when I get home I'm the one in pain for days. I would love to find those people who told me the food is gluten-free and puts tons of aloe stems in their food--ha, who's sitting on the toilet now! Ha ha!

  No but seriously, only two restaurants never make me sick (both in NYC)--Risotteria and a raw, vegan, organic, gluten-free restaurant called Rockin' Raw. Bisou Chao macaron cookies seem to be safe as well (also in NYC). I know that Jennifer Esposito is an adamant Celiac and she just opened a bakery in Manhattan--it's called Jennifer's Way on 263 E. 10th St. I'm going there tomorrow with my husband to celebrate our anniversary.

  But it's just so sad and awful that most restaurants absolutely don't care for Celiacs and are just pandering to a trend of people who don't even need to be gluten-free. I also don't understand why gluten-free product labeling is not better regulated and standardized. That would make life easier for so many people.

 There is no gluten in aloe stems.  I am not saying you do not react to aloe, but if you do it is not to gluten.  Gluten is only found in wheat products, barley, rye and foods contaminated with gluten, like oats.  ActualIy some people react to even cerified gluten free oats.  I cannot imagine aloe being processed anywhere near wheat.  Aloe is, in fact, a calmant of the gut for most people.

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#864311 We Need To Start A Thread On Stupid Stuff Doctors Say!

Posted by on 19 April 2013 - 12:37 PM

educate them with printed info from the University of Chicago.


You forgot one of the previous gems -- they don't have the 'time' (read 'interest') to read stuff that patients bring in for them :angry: (especially if it won't help their golf game.)

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#863985 What A Difference A Year (Well Four Years) Makes!

Posted by on 17 April 2013 - 04:37 PM

Do we both think she was probably a celiac? yup. Inadvertently, she has kept her MS from progressing

that much and I think she's amazing!


I wouldn't exactly say inadvertently ;)   I think I would say she has been instrumental in keeping it from progressing, just as I think that my gluten free has been very instrumental in keeping my PsA at bay.  My rheumy can't believe that I take only an occasional Humira shot (like every six months or so :blink: ) now.  He is totally mystified :P  because "diet has nothing to do with it"

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#863808 The What's For Dinner Tonight Chat

Posted by on 16 April 2013 - 05:36 PM

See this is how the plot started -- we are all turning into cave peeps and L2T passes thru with unbelievable food that smells absolutely mouthwatering....that's it I'm hooking up the dogsled ;)


And after a few thousand miles you will be able to ditch the wheels and the cooler/chillie bin/Eski (that's Yankee, Kiwi and Aussie multilinguality for you :ph34r: )

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#863670 Fiance Going Gluten Free

Posted by on 15 April 2013 - 08:26 PM

Unless he brushes his teeth he is definitely going to contaminate you with gluteny kisses :)   A lot of people have a gluten free house, but the spouse can eat whatever he wants outside the house, provided rule #1 is followed.


There is absolutely no harm to anyone in eating a gluten free diet.  You just have to be a little more aware of what nutrients are in the food you are eating.  Most 'regular' processed food is fortified with vitamins and minerals so you don't have to think for yourself.  Gluten free food is not so you have to do the thinking yourself. :D   It is not an inherently unhealthy diet unless you sub everything you are used to eating for a gluten-free counterpart, in which case you end up with more starches and sometimes more sugar.

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#863655 Some Symptoms Better, Some Worse; Where To Start?

Posted by on 15 April 2013 - 07:01 PM

Hello, and welcome to the board. 


Newbie 101 is found here:  http://www.celiac.co...ewbie-info-101/ and it IS a good place to start. :)


It seems to take a good three months or so to settle into the diet and have things start to heal and recover.  Cutting dairy is a good idea, because the enzyme for digesting it is made in the area of the gut that has been damaged by gluten and will not return until you are healed, and it might pay to eliminate the oats for now too (even though certified gluten free) because some of us just cannot do oats regardless.  Coffee is also another that many find to be a problem although I wouldn't propose elimination right off the bat.


Leaky gut is a very real problem, and healing it up is the number one priority in my book because until you do so you risk having other foods get into the bloodstream in a partially digested state and having the body recognize them as 'non-self' and forming antibodies to them and bingo - there goes another food lost (at least temporarily).  I know because I became expert at this :ph34r:   To help things along at first many of us take probiotics, digestive enzymes (gluten can temporarily put the pancreas into low gear and deplete the number of digestive enzymes available to break down your food), and L-glutamine for healing.


If, after taking all these steps, you still are having problems, then it is time to start seeking out what other foods might be a problem via an elimination diet and food and symptom diary.  But you are still healing at the moment, a process which takes a lot longer than many anticipate.  So do be patient.  But if you have not already done so, have your primary care physician check your vitamin and mineral levels, particularly B12, D, folate, iron/ferritin, calcium, copper, zinc, magnesium and potassium.  Since celiac prevents absorbtion of nutrients you could be low in any of these and require supplementation.  You should also have your thyroid function assessed, TSH, free t3, free t4, and TPO antibodies.


I think that is enough to get you started.  There is lots of good reading here on the forum; oftentimes just reading others' stories answers a lot of your own questions.  But be sure to holler whenever you need help. :)

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#863635 Thoughts For Boston 4-15-2013

Posted by on 15 April 2013 - 04:47 PM

What a cowardly attack :blink:   We stand with you, Boston, and with the runners from all over the world.

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#863460 I Want New Villi

Posted by on 14 April 2013 - 12:36 PM

Is one of your supplements a digestive enzyme?  Often a big reason we are not absorbing our food is that we have temporarily lost the ability of the pancreas to make enough enzymes to break it down.  Many of us find that taking a digestive enzyme with each meal helps enormously.  This should also help you break down and absorb your supplements.

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#862921 How Much "cheating" Is Allowed ?

Posted by on 10 April 2013 - 05:58 PM

I was a bit careless yesterday, and for the first time in a long time something rose up and bit me :ph34r:   I am really miffed with myself because who needs to feel like #*&T when they could be out having fun :rolleyes:

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