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deb_rn last won the day on August 2 2016

deb_rn had the most liked content!

About deb_rn

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    Star Contributor

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    Cooking, wine making, sewing, crafting, gardening, Martha Stewart and Betty Crocker rolled into one!
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    Berlin, WI

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  1. I won't have further testing, no matter the results of my blood tests.  I know how I felt when I went off gluten for a few days, and I won't go back... even if I have false negative tests.  My Dr said there would be no reason for the biopsy if symptoms decreased with diet change!  I don't need "convincing" or someone to take a biopsy every yr to see if I'm better!  The diet change is still up to YOU  and if YOU don't need further convincing, then it may not be worth it!

    Good Luck!



  2. Hmmm  I have terrible left wrist pain too... I was sent to a Rheumatologist years ago too... no RA.  Amazing how this is all starting to come together!  I'm expecting to feel better than I have in  YEARS!!  I've had back injections, knee and plantar injections!  I've had restless leg syndrome... the list goes on.  I used to tell people, "someday, they'll name a syndrome after me".... because I had so many weird, seemingly disconnected issues!!  TA  DA!!  It had a name all along!



  3. My results aren't back yet, but I  KNOW  what I have to do.  I talked to my Dr about the upcoming results and asked if a biopsy was necessary, since my little trial really told me I don't tolerate gluten.  He said that negative results are common, so if I felt better without gluten, then I didn't tolerate it!  I am anxious to see what the results are, though!


    Good Luck!

  4. Wow - don't go to that internist again!


    And don't give up, even though the 'expert' internist seemed to suggest that this is what you need to do.  To accept this.  You're doing the right things by questioning/seeking answers and even though it's frustrating, keep doing it.  I would also look into finding another doctor for a second/third opinion and a fresh outlook on your situation.


    I'm so sorry that you're struggling so much.

    OH my....

    I feel so bad for you!  Looks like you've gotten some great advice!

    I have felt "not well" for many years... but couldn't put my finger on it until this summer when the symptoms suddenly escalated!

    I see my primary Dr today to see if he wants to test me.  No matter what the test says... I did my own mini test last week and it's gluten sensitivity... at the  VERY least!  I'm a nurse and will fight through this to get my life back!  Now I read that my depression, insomnia, weight gain, brain fog and other things could be a result!  I'm thrilled to at least have  SOME  idea of how to feel better... if not completely healed!

    I pray you are guided to the right source to figure out your symptoms and get more complete relief!


    Good Luck.


  5. The blood tests can confirm a diagnosis, but they really don't rule it out.  Many are sensitive to gluten and it simply doesn't show on a blood test.  My doctor said to consider the gluten free diet as the "final" test.  If you are done with the blood tests (sounds like you are) try the diet STRICTLY for three months and see if you feel better.  It certainly can't hurt, so give it a try.


    Keep in mind that many feel worse in the first few days, then gradually start to feel better.  Don't give up until you have tried it for a sufficient amount of time.

    I see my Dr today.  I felt so much better when I was off gluten.  I know I have to keep eating it until I'm blood tested, at least!  The thought of putting that in my mouth makes me not want to eat!!  Which is saying a LOT for me!  I don't care if I get a diagnosis or not, but IF he wants to test me, then I have to continue to eat it.  Now I realize what my "mystery illness" has been all these years!  Until recently, it was a minor annoyance!  The brain fog has been killing me lately.  I'm hoping my Insomnia will get better too!  I'm not afraid of the diagnosis.... instead very happy to know why I have felt the way I do for so long!  I have gained weight, which isn't the norm, but my body doesn't really react normally to ANYTHING anyway!  I see this as a chance to feel great and a challenge for my cooking skills.  Husband and I can both cook, so we will just slightly modify what we do.  We have a garden and that helps!


    Good Luck to you!



  6. Great analogy about the plants, GFinDC.  That really explains the issue well.


    It sounds like you're not strictly keeping to the diet.  Unfortunately with Celiac you can't be pseudo gluten free.  It doesn't work.  That's probably not what you wanted to hear, but it's unfortunately the truth.  But it sounds like you already know that deep down.


    Following on GFinDC's analogy, your body is the flower b.  You just gave it gluten, which equals poison for a celiac.  If you stop giving it poison now, it will heal eventually and be a beautiful flower again.  But if you keep giving it little bits of poison, the plant will wear down after a while and the poison will cause a variety of other symptoms.  In the case of Celiac, other symptoms usually include other autoimmune diseases - thyroid problems, Lupus, arthritis, diabetes, etc.  Eventually the poison will cause the plant to die, but it is a slow process.  


    If it helps, I think of gluten as an actual poison.  I was explaining to someone the difference between a peanut allergy and gluten intolerance like this:  If you have a peanut allergy and eat a handful of peanuts, it's like putting a gun to your head and pulling the trigger.  The effects are immediate.  If you have Celiac and eat a bunch of regular bread day after day, it's like putting small doses of arsenic in your body.  You won't die immediately, but eventually the poison will kill you.


    How long have you been gluten free?  I know it seems really hard at first, but it becomes easier to stick to the diet with time as you learn what foods are safe. 


    One thing that really stood out for me from your post is the sausages you ate. 


    It is likely that the sausages were cross contaminated with wheat and that they just added fuel to the fire of already having the gluten baked goods.  To remain gluten free, I'd suggest avoiding anything that says "may contain wheat" or gluten or anything processed in a shared facility. 

    I also didn't see that she had been formally "diagnosed".  That is the process I start tomorrow.  My "self test" was pretty conclusive in a few short days!  It could be other intolerances as well, not JUST gluten!  I have Sjogren's Disease as well and have some swallow issues from time to time, not like yours though.  You really must see a Dr to get a full work up.


    Debbie "the nurse"

  7. Good for you that you are doing an elimination diet! It's hard and it seems like it takes forever, but it's the only way to figure out MOST intolerances.


    I believe pasta has more gluten than anything else. Not 100% sure, but I think I read that here somewhere.


    We can also be intolerant of certain fruits and veggies, such as nightshades (potatoes, tomatoes, peppers and eggplant), corn, soy, and others. Dairy is also a problem for many folks. Maybe (if you can handle it) you should start with just meat and something like sweet potatoes. Then add something like broccoli. If that works, add a different veggie or fruit. Go for things that have the most nutrition first. If you can find organic stuff, so much the better. I was reacting to pesticide residue, even though I washed my veggies well. It took a few months before I could eat grocery store produce, and that was because my gut was so raw it couldn't handle anything.


    Oh yeah, you need to be aware of cross-contamination. Read the Newbie 101 thread and it'll teach you about places gluten can hide. And be aware that any supplements or medications you take may have gluten or soy, and almost definitely have corn.


    Anyway, when you trial gluten you will find out within hours to a couple or three days if gluten is a problem for you. Our reaction times vary. Did you have any other symptoms besides thyroid? A lot of us don't get the classic celiac symptoms, but there are other symptoms like rashes, brain fog, insomnia, anxiety, and a host of others.


    You will most likely go through withdrawal for the first two or three weeks too. It is an actual physical withdrawal. You'll get headaches and mood swings. You may feel hungry all the time. I actually felt a bit dizzy for a while too, and had a general sense of "unwellness". But stick with it and you will be able to pinpoint what foods bother you.


    Best of luck to you. If you have any questions, ask away, and please keep us informed of your progress. :)

    I don't see the Newbie 101.... where do I find that thread?