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GottaSki

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Everything posted by GottaSki

  1. GottaSki
    Welcome! Definitely HUGE deal with HAZARDOUS consequences. I can understand if you have no symptoms why you might ask why not? just a little? once in a while? In fact I remember thinking similar thoughts at diagnosis even though my symptoms were very bad. After the initial shock wore off and I read as much as I could - I became very happy that...
  2. GottaSki
    You are right. This is not alot to choose from. There is very little protein or fresh produce here. Over half of this list is dairy or processed foods. Are you getting enough calories daily - at least 1500? Have you been tested for specific nutrient deficiencies? Are you taking any vitamin/mineral supplements? Have you tried removing dairy before...
  3. GottaSki
    You are doing the best next thing. Remove ALL gluten and wait for improvement. Although she does not have obvious reactions to gluten this may change in the coming months - this is very common. Given time she will likely grow, have improved bowel movements and other improvements to minor symptoms that you may not have noticed until gluten is removed. ...
  4. GottaSki
    tough call...don't know how long you've been gluten-free. If the negative test was tTG IgA, it can't hurt to get more - except your wallet Make sure there is Total IgA DGP (deamidated gliadin peptides IgA & IgG)
  5. GottaSki
    You've already had great advice. Just wanted to add - if you do not start reacting to small amounts of gluten - I'd suggest repeating blood tests at 3 months, 6 months and then annually thereafter. My Celiac Doc had me tested at these intervals even though I had strong reactions to small amounts of gluten from the beginning. Welcome to the site -...
  6. GottaSki
    Fun, fun, fun I stopped taking probiotics at about 6 months gluten-free because I thought they weren't working and were quite expensive - I regret it as I ended up with subsequent severe food intolerance that can't be absolutely linked to bacterial overgrowth - yet very likely that continued probiotics could have helped. They are worth every penny...
  7. GottaSki
    The blood tests can be false negative. There are many that have posted on this site that they had negative blood with positive endoscopic biopsy. My blood tests at dx (after decades of worsening symptoms) were all weak positive, but all the biopsies showed total villous atrophy. My children (teens/young adults) are all gluten-free now - some had ALL negative...
  8. GottaSki
    At diagnosis my Celiac Doctor spent one very long appointment going over all the supplements I should be taking until my body could absorb nutrients properly. You are correct to not accept the answer you received with regard to supplements. Get your nutrients checked and start supplementing where you are deficient. If you are not already, start taking...
  9. GottaSki
    I buy kraft products all the time. There are many that I can no longer eat because of other food intolerances - which makes me believe that some of the reports of people reacting to Kraft products are caused by an unknown intolerance rather than gluten. I know in my early days I was convinced a few things had gluten in them when it was actually a different...
  10. GottaSki
    It is very difficult to remain unsure, but it seems to me that your best action right now would be to remove any remaining gluten - be as strict with your body as you are with your son - to monitor for improvement. Keep supplementing the nutrients you are deficient in - it can take a very long time to improve - especially if you have trace amounts of gluten...
  11. GottaSki
    Welcome Renee- No apologies needed - this is the perfect place to rant. Personally I don't understand how anyone could not be frustrated during the transition - I was in tears more than once while reading teeny tiny labels at the grocery store during my first months gluten-free. You will hear it again and again - it does get easier. I had other severe...
  12. GottaSki
    Hello! Positive blood tests + Father + Sibling + Positive Dietary Response is enough information to make the endoscopy optional - in my opinion. I'd remove all gluten and re-test his blood at six months and then annually thereafter. Good Luck
  13. GottaSki
    Wow....I am surprised his doctor called it a "Leaky Gut" - did he mention why he thought his gut had become Leaky? Or mention what tests were run. Will probiotics help? Maybe Are probiotics enough? Doubtful Food intolerances, bacteria, yeast can all play a role in a leaky gut - if food is the cause - it needs to be removed to give the gut a chance...
  14. GottaSki
    Welcome! Fun screen name I'll second everything GFinDC said - the tests are not perfect. If your doctor only took one biopsy of the small intestine you could have damage from Celiac Disease that was missed. Regardless you need to remove all gluten from your diet. Oh --- you do not grow out of Celiac Disease - this misinformation was taught in...
  15. GottaSki
    Welcome Colette! A good gluten-free multi vitamin/mineral supplement is important. If you haven't had vitamin/mineral blood tests it would be a good idea. Many of us are low in specific nutrients which need supplementation until we start absorbing nutrients properly. Best wishes for continued healing
  16. GottaSki
    I had them for the first year or so....very rare now, but they still happen. Last one was actually about guacamole instead of gluten - I really miss avocados - gluten not so much
  17. GottaSki
    ps....I have NEVER said doctors were dumb. Not sure if you said this in response to my comments, just wanted to be sure someone else reading this thread did not think I had indicated lack of intelligence among doctors. I have indicated on many occasions that there is a real lack of specific and up-to-date knowledge of Celiac Disease symptoms and testing...
  18. GottaSki
    Now I must have not been clear. I am not confused at all with regard to inflammatory responses in the body. My confusion stemmed from your statements in which it seemed you were talking about Celiac Disease when you must have been referring to inflammatory response to infection. The research I would be interested in seeing is that with regard to...
  19. GottaSki
    I was confused by some of your theories: Celiac Disease damages the Small Intestine, not the Colon. Please forgive me if I did not understand the intent of your post, but it sounded to me like you are saying the immune response/antibodies in Celiac Disease are in response to intestinal damage, rather than the cause of the damage? While I do understand...
  20. GottaSki
    You have to be ingesting gluten in order to produce the antibodies measured in the blood work. The problem is that some of us have very weak positive blood results, so any reduction of gluten can change your results - if you have borderline antibody levels in your blood, the reduction will cause negative result - which can make an already difficult diangosis...
  21. GottaSki
    Welcome! No, an endoscopy does not normally include biopsies for Celiac Disease. Not all GIs have experience with Celiac Disease - it is best to look for one that is actively treating patients with Celiac. No, blood tests for Celiac Disease are NOT often among blood tests run - I had autoimmune tests done repeatedly for decades because of symptoms...
  22. GottaSki
    Don't be too hard on yourself - you were trying to help this young girl understand how serious Celiac Disease is. I completely understand that what you told this girl was out of concern. I do think a conversation with her parents is your best bet. Explain exactly what you said and why. Teenagers often take part of the conversation away with them without...
  23. GottaSki

    ARCHIVED Psychosomatic

    GottaSki replied to T.H.'s topic in Super Sensitive People

    Great observation Shauna. After having my symptoms dismissed by doctors for decades because all the tests they chose to run came back "normal" - I firmly believe no one has the right to dismiss another's symptoms. Have I had incorrect ideas of what has caused my symptoms? Absolutely - having people suggest alternative reasons for symptoms is very helpful...
  24. GottaSki
    Bubble-Girl reporting in - my family has discussed creating a bubble suit for me to avoid everything I am sensitive to - more than once
  25. GottaSki
    Welcome Chris! You certainly have many symptoms that point to Celiac Disease. You can have either your primary or GI order the full celiac blood panel. Many doctors will want to run just one or two of the tests, but the full panel really gives the best information with regard to possible Celiac Disease. Full Celiac Blood Panel: Total Serum IgA...
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