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Member Since 13 Mar 2009
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#858151 Why Are Drs So Hesitant To Test?

Posted by on 12 March 2013 - 07:31 AM

Rambling is good....sharing our experience here is good.


The reason many of us stick around on this forum is directly related to the theme of this thread...had ONE doctor known the actual symptoms of celiac disease of the many I went to over the past thirty years with IDENTICAL symptoms, perhaps my career and last ten years would not have been destroyed.  I am very lucky -- I have a husband that stuck by me even when he began to think it was all in my head -- when finally diagnosed he had a very tough time with his feelings of guilt over dismissing much of what I said with regard to how I was feeling over 30 years.  I forgave him -- no problem -- he stuck with me.


So---I answer as many questions as I can from folks that come here --- doctors are starting to catch up with us -- but they have a very long way to go.  The primary that finally diagnosed me after three years and over 50 medical tests - first dismissed Celiac Disease because I was neither child or underweight -- and she is a young physician that showed me her exact notes from med school with regard to celiac disease -- one small lecture with key points -- childhood disease that many outgrow; short stature, underweight, severe diarrhea.  None of those were my symptoms even as a child!!!

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#857631 Am I Just A Wuss? (Staying Home After Gluten/soy/whateverings)

Posted by on 08 March 2013 - 10:11 PM

Ah Peg - think you may be confusing me with Irish - which is a huge compliment.

And for others reading along - removing gluten alone did not bring health to me -- yet it did for two of my kids and two grands....my family could be the poster for early diagnosis.

Ps..someone asked.why we wouldn't tell newbies it takes years to heal? MOST celiacs do heal with the complete removal of gluten for a period of 3 to 12 months. Why would we, that have had the worst possible outcome of this disease want to put scary thoughts into those newly diagnosed?
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#857481 Home Test Kit - Positive Result...at Last!

Posted by on 08 March 2013 - 07:19 AM

I disagree with calling the home tests garbage. It is limiting in that it only measures tTG-IgA, but until very recently this was the only test folks were given to screen for Celiac Disease and still remains the only test many primary doctors order.

With the positive tTG along with the long list of symptoms and a child diagnosed - I would say you are very likely celiac. It is wise to stay on gluten until you have the full antibody panel run - I forget if toworryornot listed nutrient testing as well - so ill add the following to your list - you can have primary run all of these to help speed the diagnostic process:

B1, B2, B6, B12, D, K, iron, Ferritin, Copper and Zinc

Good Luck to you both!
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#857298 Grain Sensitivity Reality

Posted by on 06 March 2013 - 04:38 PM

I remember when I first joined this group after my Celiac diagnosis, I read a post from a lady who said she couldn't tolerate any grains except for occasional white rice.  I thought to myself, bless her soul!  Well here comes another one.


I don't know if I'm having a bad week or what.  I had a bowl hot cereal--teff grain made with pineapples and pure brown sugar late one day.  (It tastes almost identical to pineapple upside down cake; teff hot cereal has a bready taste, and texture like rice cereal.)   Shortly after, none of my joints wanted to move and I felt whipped.  On the other hand, aspirin took it all away so I'm sure the cause was mainly inflammation.   On another day I had Udi's granola in yogurt and almost immediately the same joint pain started back up, and again aspirin took it away.  No stomach symptoms, just extreme unusual fatigue.  


Though I've never had a single symptom from brown or white rice, I went grain free, all natural/whole foods, for a couple of days and I've felt fabulous.   


In addition to Celiac, I'm completely intolerant to corn, as in I can't tolerate corn vinegar, oil, derivatives, caramel color, starch, etc. without having the same symptoms as Celiac, plus anaphylaxis from the very contact of corn on my throat.  It's immediate and scary.  My last episode was from almond/coconut milk that contained the forbidden potassium citrate.  I had had a tablespoon in my coffee.  I responded to one swallow of the coffee.


Could there be some reality to being grain intolerant altogether?  


I get the feeling the researchers should have categories for Celiacs, like diabetes type 1 and 2.  If that were the case, I think I'd be Celiac Type 10.  It seems like I keep having to adjust my diet and it takes a lot not to get depressed over it.



Hello from another 10 -- seems that those of us that went undiagnosed for decades have to do a little more work than the average celiac...I've been grain and many other things free for over eighteen months and so far I have only managed a touch of white rice -- and I mean just a bite -- tried a small serving awhile back and didn't work well.


Good news is now that I am finally feeling like a human-being rather than human-amoeba I can finally say I don't care what I don't get to eat as long as I get to stay vertical -- I do, however, throw many teeny-tiny pity parties that I don't invite anyone to -- once in awhile my husband -- but they are a very short foot stomping session which passes :)


I do remain ever hopeful that I will get many healthful foods back one day....especially potato chips ;)

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#857018 College Dating

Posted by on 05 March 2013 - 04:58 AM

Welcome DS!


I've got two sons 18 and 19 that eat out all the time -- if it is a restaurant that they trust they order - if it is a new place they bring their food along. 


They have been gluten-free for over three years and both have found it helps them interact with girls -- teen girls - for good or bad believe eating gluten-free will help them lose weight -- understanding celiac disease and true facts of gluten-free eating has been a great conversation starter for the older/more shy of them.


Good luck and don't be afraid to say -- I can't eat this or that...but I'd really like to hang out with you anywhere you'd like to go :D

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#855990 18M Old - With Genetics Against Her

Posted by on 26 February 2013 - 01:44 PM

Awesome advise!!


She's a stubborn one, so whatever foods I do end up having to remove from her diet will be quite the battle, but will be done for her own health. 


If it turns out to be gluten related, my concern is more about my husband's understanding and the amount of safeguards that will need to be in place to allow the house to still have gluten.  They often enjoy their 'snack' time together, which I've managed to switch them to popcorn or nuts, but when I'm not there I have a suspicion that its more cookies and chips. ha.



She ate minimal yesterday, refusing even her almond milk.

At most she ate 4 pieces of pineapple bits (daycare) and they counted 8 saltines.


No more diarrhea or signs of reflux during the day and she survived the night without another blowout as well.



It is tough to transition, but you will be amazed how many foods are gluten free naturally.  Honestly, I think the transition is going to be harder on you and Dad -- kids adapt quickly, just don't say "you can't eat that" too many times -- stick with substitution and distraction.  Little girls love to learn the rules of anyone's special needs -- by the time she is three, she'll be teaching her classmates why the food they are eating can be harmful to her.


PS...that she craves saltines and other glutenous foods is common in celiac disease -- processed comfort foods are a great comfort to our brains, not our digestive systems -- they are a want, not a need.  Your family will find lots of new comfort foods that will sooth both brain and body -- ours did :)

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#855340 Gluten Free Nuts?

Posted by on 22 February 2013 - 08:12 AM

I use nuts.com - great company!

I can only eat almonds and was having a hell of a time finding completely gluten free raw almonds.

I now buy them in bulk to make the per pound rate affordable with shipping then use a vacuum sealer to make one pound bags that store well.
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#855247 Need Help With Tests Results Please

Posted by on 21 February 2013 - 04:48 PM

Great Work PositiveThinking!!!


It really does help to be prepared and be partners with our doctors.


Have a wonderful weekend :)

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#854618 Need Help With Tests Results Please

Posted by on 18 February 2013 - 02:46 PM

Bone scan -- usually folks don't get one until later -- my celiac doc recommended and it wasn't pretty -- I was 43 and had the bone density of a 80-90 year old -- good news is bone replaces itself completely in about 5 years -- looks like mine is -- am planning to repeat scan at about 6 years gluten-free -- should have the bones of a 20 year old by then ;)

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#854608 Need Help With Tests Results Please

Posted by on 18 February 2013 - 01:11 PM

That is great that your TSH improved -- you are not moving towards Hyper -- close to "1" is recommended as the best TSH.

Not sure about B12 -- just know it is good that it isn't low.

Bone scan is a great idea -- my celiac doc ordered for me when freshly diagnosed...haven't had a follow up, but can tell you after nearly four years gluten-free -- my very bad back that I've had since early teen years has vanished -- back is stronger than every in my life :D

And yes, let the doctor lead, but do have your list of questions and tests you'd like at the ready -- I always do much better with a written list in my hand.

Yes, follow up celiac antibodies are important -- I had them at 3mo, 6mo, then annually after that.
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#853656 Healing - Running Out Of Patience.

Posted by on 13 February 2013 - 10:40 AM

Yep .... the bad days that follow the good ones are the toughest for me too - esp when u can't figure out what got u.

Hang in there!


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#853644 Healing - Running Out Of Patience.

Posted by on 13 February 2013 - 09:30 AM

Everyone is different.

Probiotics and digestive enzymes can help -- sometimes removing other foods.

I sure wish we could all plant a patience tree -- I could have used it's fruit these past years....time finally taught me patience -- hoping you don't have to wait long as long as I did for healing to begin.

Hang in there :)
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#853641 How Old Are You?

Posted by on 13 February 2013 - 09:21 AM

For me...age is truly just a number.

When I turned 47 last May - I felt like a very ill 87 year old.

As 48 approaches - I'm feeling better than I did at 18.

Oh and I've always looked younger than I am - which has been both an advantage and disadvantage at different times. Now, I must say I am very pleased that I look much younger than many of my friends ;) Hubby is only two years older than me and folks think he is more like ten -- he hates it -- I love it.
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#853596 The What's For Dinner Tonight Chat

Posted by on 13 February 2013 - 04:44 AM

Encore bol.

And turns out yogurt is a no on the reintroductions. Might try dairy again in a few months.

Sorry to hear about yogurt -- just wanted to add -- make sure you try other dairy -- yogurt can be hard on the healing digestive tract for other reasons than dairy. I can't eat it because of my issue with high histamine/histamine inducing foods -- my damaged small intestine can't make the two enzymes necessary to regulate histamine....here are a couple links - just so your familiar with this random group of potential problem foods:


along with a great article IrishHeart found:
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#853576 I Need Help, Someone Give Me Answers... Please

Posted by on 12 February 2013 - 10:43 PM


I agree with Tom - transition takes time - the learning curve is steep - yet it does get better.

Hang in there & ask questions where needed.
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