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Help! Recently Diagnosed...
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6 posts in this topic

Please help!!

 

I have been recently diagnosed with a possible gluten intolerance, and was advised by my doctor to try a gluten-free diet.  It seems that there are thousands of websites on tips and tools of this problem, but where do I start? 

 

 

Any and all help would be greatly appreciated!!

 

Thanks so much!!

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Please help!!

 

I have been recently diagnosed with a possible gluten intolerance, and was advised by my doctor to try a gluten-free diet.  It seems that there are thousands of websites on tips and tools of this problem, but where do I start? 

 

 

Any and all help would be greatly appreciated!!

 

Thanks so much!!

 

First thing I did when I decided to try gluten free was sort the kitchen. I live with people who do not cook/eat gluten free. So separating everything was a big help. I have my own corner of the kitchen cabinets where I've looked over all the labels and I know anytime I go there the food is "safe". Start with the obvious foods, but using the websites and tools you have - identify what ingredients in your food labels may contain "hidden" gluten and take it from there.

 

I haven't gotten so far as separate toaster, pots, pans, although I do have separate cooking utensils. I will most likely finish the job once I'm completely off my gluten challenge. 

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Hi casharp,

 

Before you take gluten out of your diet, have you been blood tested for celiac or undergone an endoscopy?  You must be consuming gluten for both of these tests, and do NOT let the doctors tell you otherwise :)   If not, it would probably be a good idea to at least get the blood test done for it.  Your PCP can order this test.  A full celiac panel is:

 

DGP igA

DGP igG

ttg igA

ttg igG

EMA

Total igA serum- this test is a control to make sure you produce enough igA for the other igA results to be valid

 

Welcome to the forum!  

 

Please help!!

 

I have been recently diagnosed with a possible gluten intolerance, and was advised by my doctor to try a gluten-free diet.  It seems that there are thousands of websites on tips and tools of this problem, but where do I start? 

 

 

Any and all help would be greatly appreciated!!

 

Thanks so much!!

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To echo the others above...  

 

My previous doctor gave me the same bad advice as you got. :angry:

 

That was a big mistake for me to not be tested back when I was at my worst.

 

It's worth the money to do a Celiac panel    total IgA,   tTG-IgA,  DGP-IgA,  DGP-IgG  as you will get answers.

 

It's worse to be in a state of uncertainty. :wacko:  

 

Eat lots of bread and gluten and get tested to know once and for all. -_-

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Trust me you need to be tested prior to going gluten free. I have a long story about that. I was gluten free for a year and a half and then thought I wasn't Celiac. I never had a test one way or the other. I broke out in DH last month and tested highly positive for Celiac when they did the lab work. Make sure you get it right the first time. You don't ever want to have this rash.  

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    • I've been eating gluten for 4 weeks now, as recommended by my doctor, to test for Celiac. Today I got 'some' of my blood test results back, although not all... I have my biopsy test scheduled for tomorrow morning, but I don't know if I should go through with it or not if the other results are not back by morning (which would show a clear positive or negative)... The results I got so far have a few alarming numbers...

      My platelets are marked as High, being 484 x10^9/L but what I found more confusing was that my ESR is a Low 5mm (with average rate being 10 - 14)... 

      My Ferritin (Serum) is 36 ng/mL which I think is low(?)

      I'm no doctor, and I know that the best thing to do is ask a doctor, but I'm quite sure that if I go for my biopsy appointment tomorrow my specialist would insist on me taking it, even if the other results are not back by then. I'm sure it's not a pleasant experience and would like to avoid going through with it unless it is necessary. 

      Also, I took my blood test after eating gluten for only 3 weeks (since that was a week ago), and if my blood tests result as negative, I'm thinking about trying to keep eating gluten for another 4 weeks and test again then... if that comes positive, I'll then want to have the biopsy test done.

      What do you make of the above numbers? Any connections with celiac? Or with something else? 
    • The first two tests (at least in the US and most of the EU) have been replaced by the DGP tests (at the bottom) of GFinDC's list of celiac tests.  Not all celiacs test positive to the common Screening TTG.   The TTg is good and catches most and it was cheaper to run the best one (it is all about the money), but researchers realized they were not catching all celiacs.  Here is a link to the University of Chicago's celiac website.  When I was diagnosed three years ago, this site recommended just the TTg (as did the American GI Association).  Now they have expanded the list of celiac tests.   http://www.cureceliacdisease.org/screening/ Luckily, my GI must have just attended a GI conference and he ordered the complete panel for me.  ($400). It paid off.  Only my DGP IGA was positive and the rest of the blood panel (including the popular TTG test) was negative.  My biopsies revealed some severe intestinal damage.  My new health provider only allows PCP/GP doctors to only order the TTG.  So, if I want the follow-up testing to see if I have improved or had a gluten exposure, I must go to my New GI.  Yep, it is all about the money!   Keep eating gluten and make sure your  GI takes four to six samples during the endoscopy.  Maintain copies of all your results.   Your symptoms?  Yes, there are over 300 celiac disease symptoms.  celiac disease does not just affect the gut, but mis-informed and those who do not keep up with the latest in medical, do not seem to know that!   Do not give up!  
    • It's great to hear from you, Nightsky.  Glad to also hear of your steady progress.  Living gluten free is definitely a learning process, and even the baby steps are times to celebrate.  Wish you all the luck in the world as you continue to heal for the glutenization.  
    • Hi Nicky, When you first go gluten-free your symptoms often do change.  Feeling better or worse is possible.  The healing process is a major change in our gut and that means a big change in the gut flora is likely,  which can cause symptoms by itself.  Additionally the immune system doesn't stop making antibodies on a dime.  the immune system keeps working  to defeat the gluten invaders until it is darn good and ready to take a break. You really shouldn't start the gluten-free diet until all testing is completed.  That includes a full celiac disease panel and an endoscopy with biopsy samples.  It's much easier to complete testing while still a gluten eater than it is to stop gluten and go  back on it for testing later.
    • Hi Kircket, Welcome to the forum! Yes, he could be wrong.  Not everyone passes the blood tests.  And they are just one part of the diagnostic process anyway, although an important one.   Did you have the complete celiac antibodies panel? Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
      Total Serum IgA If you didn't have the full celiac disease antibodies test panel, I'd insist on getting it done.  There have been numerous people on the forum who tested positive on one antibody but not on others.
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