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GottaSki last won the day on September 26 2014

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About GottaSki

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    "The past is the past...I've got places to be."

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  1. tTG-IgA (Tissue Transglutaminase)


    DGP-IgA (Deamidated Gliadin Peptide)


    EMA-IgA (Edomysial antibodies)

    Most folks are back in normal range after a year....if completely gluten free.

    Folks that remain positive either started off with extremely high positives or are not completely gluten free. Compare results to original antibody levels. If you don't know them, as for a written copy from your doctors.

    As mentioned, it is a very good idea to check that nutrient levels are all good :)

  2. The celiac antibody tests are IgA and IgG based. With deficient total serum IgA, the IgA based celiac antibody tests are not valid and make the IgG tests that much more important.

    Another important item you mention was deficient Vitamin D...celiac disease prevents proper absorption of many nutrients.

    It takes a doctor that understands the combination of symptoms, nutritional deficiencies and proper celiac antibody testing to diagnose celiac disease in many cases.

    I agree with the diagnosis, but highly suggest further nutrient testing as many need to supplement until the digestive system has a chance to heal and begin to properly absorb nutrients.

    All that said...if you are not comfortable with the diagnosis, I suggest you seek out a gastroenterologist with celiac experience to discuss the possibility of further testing.

    Undiagnosed celiac disease can cause all of the symptoms known as Fibromyalgia....as others have mentioned, it can take time for these symptoms to improve.

    The complete removal of gluten is not an easy transition, but once you are past the learning curve it becomes much easier to live gluten-free.. Do read the newbie thread others have linked to.

    If you are thinking of consulting with Gastro...do not remove gluten until you do. Further testing (endoscopy with small intestine biopsy) requires continued gluten consumption until the endo has been completed.

    Welcome to the best club you never wanted to join :)

  3. Well said Mommida!

    Emily...we understand this very well. The changes in the US post 9/11 have been hard to tolerate.

    Yearning for a safer time never ends dispite becoming used to enhanced security protocols.

    We love Canada in this family -- very much look forward to visiting more than BC one day.

    Stay strong Canada!

  4. I admit that I haven't read this entire thread...but will tell you this. I am one of those that has not improved with strict gluten-free along with all attempts to make other adjustments.

    If I had not had that initial endo, along with each follow up...I would never have found the cause of my continued problems or ruled out refractory celiac.

    Endoscopy remains a valuable tool.

  5. I drink Red Wine with no issue...suprisingly as it is high in histamine, but I don't question it...I just enjoy it :)


    Have you already lost other alcohols like vodka?


    And you aren't a whiner because you are frustrated, but same rule...keep trying to find something that works with your body.


    Glad to hear you are able to attend social events...it's been difficult for me to attend anything after 3pm for most of the last 15 years so I celebrate every time I can go out...with or without wine in tow ;)


    First I want to make this clear, I am not trying to come across as a whiner, or looking a sympathy hound aka sob sister, that is not my m.o. However where I live in Louisiana food is a big part of get togethers, but alchol is a massive one over food.  I was rejoicing that there was products like New Planet on the market and sold here in a number of places but with  current events now even that is taken away( or it seems). I do not have a drinking problem as I am not really a drinker exept on new years and once in a while occassions that are trust me precious few, as I am a advocate for moderation and if the event seems worthy of a toast or what not. I know I am preaching to the chior on this but this just flat out bites the big one.  When the celiac diagnosis came forward it wasn't so hard as I was a vegan until this nightmare, so that helped with the food angle. But now its like ok so what do I get to do at social events?

  6. I am  doing more  research than a freaking scientist does I feel at the moment. I keep saying onward and upward but wow.. Just when you feel you figure this mess out,,, bam!!


    Been there, done that and still am. 


    I could have written your exact post many times...as recently as a year ago.


    For better or worse we have learned to never think we have solved the complete puzzle...I have had three major periods of improvement since diagnosed with Celiac Disease in 2009.  Each was followed with a flare that was worse than any previous flare which made us beyond frustrated that each time we thought we had the solution I was struck back down.


    What I have learned after the last two periods that I call my "Human Amoeba" stages (months of severe flare and brain fog that becomes brain numb along with loss of all use of muscles and tremendous joint pain) that I need to accept making adaptations to my world while continuing to research and work with the best doctors I can find to gain more usable hours in the day.


    How's that for a bummer?  Amazingly, I remain extremely hopeful and eager to learn as much as I can about how this silly body of mine works -- added bonus is my kids and grands all have symptoms similar to mine throughout my life so I am excited that their lives will be greatly improved by what I continue to learn.


    Hang in there and keep researching...none of us is identical, but many of us have common symptoms and issues.  You aren't alone in this struggle.

  7. Yes, that is what the dr is concerned about mainly. He sees low IgA levels a lot, but was more concerned because hers is VERY LOW. I'm still not sure what we are going to do. I'm on the fence and can understand the benefits of getting it done, but I'm also scared. My husband is 100% against it, though, and it's difficult to sway his decision. I think we will stick to a gluten diet (as much as it kills me to see her in pain) until we both can agree on something.

    Thank you all for your input.

    I understand not wanting to undergo an invasive procedure, but this one is necessary. We opted to forgo endoscopy with our seronegative teens as they were willing to go gluten-free on their own due to frustrations with symptoms. We cannot go back, but each of them along with their father and I would say....hell, yes! To endoscopy if we knew then what we know now. You can't replicate this moment in time.

  8. They are different.

    Here is an link that show foods on clear DO and DON'T lists for FODMAP.


    The best way I can explain FODMAP is gluten free plus other foods that are believed to exacerbate the symptoms often called IBS or SIBO.

    The terms of Paleo are often argued amongst the primal and paleo folks, but if you stick with whole foods of meat, veggies, nuts and fruits (that you tolerate well) it can be helpful while a digestive system is healing.

    For me, by the time FODMPs was suggested there were already many of allowed foods I could no longer tolerate. I'm not strictly paleo, but my diet of meat, veggies, small quantity of fruits and almonds falls closest to what is known as Paleo.

  9.  I know :/  I'm trying to be positive about it all, but my understanding was that the test result was more significant than she seemed to think it was.  But then I also feel like I'm being a hypochondriac sometimes, and want to respect the doctor's training and experience (but not blindly).  Anyway…  we are going to go ahead with the six month trial.  Her symptoms at this point are not so bad that they are really affecting her quality of life or anything, and the doctor did give us the recommendation to repeat the labs earlier if her symptoms worsened.  With everything we've been through with my other children as well, I've come to really appreciate the importance of an actual diagnosis.  Especially with children.  There also is that possibility that perhaps it is not celiac disease and I'd like some answers on that then as well…  we still don't have answers with the other kids (one of them has even gone through with the biopsy) so perhaps it is not celiac after all..  although my gut (pun intended, lol) tells me it is…  who knows….

    If possible it really is best to get an accurate diagnosis....just sad that it can be such a frustrating process.

  10. Update time!


    Okay, according to our doctor (who again, is the director of the celiac center at a prestigious children's hospital), the deamidated gliadin test is not as specific to celiac disease as I had thought from what I was reading :/  She said that the endomysial abs test was more specific and a positive result on that test would have her thinking more about celiac disease (we did not have this test done).


    She also said that a positive result on a deamidated gliadin test could also be caused by some other conditions…  she specifically mentioned severe acid reflux or food allergies.  So my daughter's result could either be from one of those, or it could in fact be *early* celiac.  


    So the plan is to keep a food diary for at least a week, along with noting symptoms, etc.  then continue on a regular diet for 6 months and then test again.  If it's celiac, the numbers will be higher at that point, and we will do a more complete panel of labs.  If her symptoms worsen, we do the labs closer to the 3 month mark.


    I wanted to update for anyone who might find themselves in a similar situation :)  


    Of course I wish I had every answer now, but this is the way things go I suppose…  one step at a time.  I can wait for 6 months :P

    Thanks for the update and asking the doc about what else could elevate the DGP....that is the first time someone came back with an answer...I've got something to research now :)

  11. I'm having a lot of trouble losing weight. I'm assuming it's because I'm new to this and my body hasn't had time to adjust and heal. When I do lose a few pounds my belly still looks swollen...it's discouraging so I'm wondering if it will always be that way?

    Welcome SB!

    It can take a while. How long ago were you diagnosed?

    What age were you when diagnosed?

    How long did you have symptoms before diagnosis?

    Sorry for 20 questions..but details help folks here lend their knowledge.

    Hang in there :)

  12. Okay guys, let's please reign this in here. Back to the original question.

    Happyplace, Unless it has been totally shot down, I would open conversation with the school administration back up. You may be able to ask for your child to be sat away from the peanut allergic child(ren) and while you won't blatantly send nut items there, not worry about shared facilities, etc. Bottom line is you can't let your kiddo starve and have a non-balanced diet and there has to be a better solution that can be reached with more understanding of everyone's needs.


    We were bringing the topic back to the original question.

    I also think Happyplace can appreciate how tough it is to navigate these problems and likely appreciates the information provided.

    Respectfully, Ski