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Deaminated Marcus

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Everything posted by Deaminated Marcus

  1. Deaminated Marcus
    I'm glad she's been diagnosed at this early age so that she can have a happy healthy life vs the years of suffering some of us had. Good luck at finding the cause of the headaches. Does she drink enough water?
  2. Deaminated Marcus
    I put some on my potatoes about 2 years ago and it helped prevent the bloating and the aches. I bought the pharmacy's brand. But they were expensive.
  3. Deaminated Marcus
    No Kareng, I was never diagnosed, I'm still waiting for a gastroenterologist to scope me. Thank you all for your replies. I can see 2 changed over time and one remained the same. I asked because the young gastro doctor I saw last week said I don't fit the Celiac profile. And a friend keeps saying I don't have Celiac because my symptoms are no longer...
  4. Deaminated Marcus
    When I read a Celiac book I saw I had the classic childhood symptoms of chronic D, sickly and being skinny. In my 20's the symptoms changed and I lost to chronic D and I gained weight. Because doctors are so misinformed, I just wanted to know if others who were diagnosed with Celiac in adulthood can remember if their symptoms changed from Childhood...
  5. Deaminated Marcus
    The Celiac villus biopsy of one sample is worth squat. Not enough samples taken. Get the blood tests such as nvsmom wrote. Here's the Celiac panel I did: Total IgA Transglutaminase IgA tTG-IgA Deaminated Gliadin IgA DGP-IgA Deaminated Gliadin IgG DGP-IgG Eat 4 slices of bread for at least 12 weeks. Open Original Shared Link
  6. Deaminated Marcus
    That is the best Celiac panel I've ever seen. I wished mine was as complete. And on sale too! Eat 4 slices of bread for at least 12 weeks. (source: Open Original Shared Link)
  7. Deaminated Marcus
    Sometimes dizzyness can be caused by a problem in your ears. Then when you get dizzy, it can make the person feel panicky. Maybe see an ear specialist? Another cause is the blood pressure takes time to adjust when you get up suddenly. Or a heart problem. You could ask to wear a portable ECG heart monitor where you press a record button when it...
  8. Deaminated Marcus
    I used to wake up thinking there was or had been an earthquake as my bed shaked me awake. One night I checked on the internet to see if there had been an earthquake in my city: no. So next time I woke up feeling the bed shake, I waited quietly and I realised it was me.
  9. Deaminated Marcus
    When i went gluten free over 2 years ago, I went into hyper mode at the start. I don't remember how long it lasted. It must have been over a month. I could barely sleep and I was bouncing off the walls with energy and I was rambling on full speed when I spoke. Thanks Mushroom. That is encouraging as I still don't have a diagnosis.
  10. Deaminated Marcus
    Hi Hala, I wondered the same thing. I had procastinated going back on gluten to do the blood tests for fear of a wave of pain. But it didn't happen like when I tested it 2 months after going gluten free +2 years ago. Now I'm consistantly eating bread everyday but the pain isn't consistant so I don't know what is going on.
  11. Deaminated Marcus
    I found this report has useful information about Celiac. Open Original Shared Link (Credit goes to Powerofpositivethinking for finding this report.)
  12. Deaminated Marcus
    Those are all the classic symptoms. Which blood test did you get done? The doctors love to give the tTG-IgA test but it's not sensitive for kids. Ask for the DGP-IgG blood test. Insist on this test. Do not leave till they give you the requisition for it. He has to be eating gluten to get the test done. It's important to have a diagnosis...
  13. Deaminated Marcus
    I always had dizzy spells as a kid. My urologist said to drink more water for kidney stones and coincidentally that helped with my dizzy spells. I read dehydration is part of Celiac and that is a piece of my Celiac puzzle. It could have been the eggs. Keep a food diary. Good luck with the tests.
  14. Deaminated Marcus
    Before you make your kids gluten free get them tested for DGP-IgG. DGP-IgG is the most sensitive Celiac blood test for children.
  15. Deaminated Marcus
    I'm sorry to hear about your bad experience with the Rheumatologist. I saw a gastro enterologist last week and he dismissed any links with pain and Celiac. He said I don't have the Celiac profile. My kind PCP wants to send me to a rheumatologist but I was hoping to be scoped at both ends in case I have intestinal inflammation as an explanation...
  16. Deaminated Marcus
    Well said Flaykee, I saw an idiot doctor back in the fall of 2010 after I felt better after I went gluten free. She told me not to get tested because it's too expensive. She could have sent me for a tTG at the hospital. This year after reading on this forum, I went for the full panel at $125 but tested negative possibly because I was gluten free...
  17. Deaminated Marcus
    Thanks powerofpositivethinking, the GI I saws last week said it's just IBS yet IBS is a testing criteria listed on page 15. That is a thorough paper, which could help doctors be knowledgeable but if they don't read it, they will stay ignorant. KristinIrwin: as powerofpositivethinking, says, page 12 table is worth a look.
  18. Deaminated Marcus
    When I read your reply I thought I had written it. I get the pain in my left side the most often, and transverse colon and on my right side towards the pelvic crest and at night. I often wake up with back pain despite trying several mattresses. Yes it started after I was gluten free. (sorry) It took a while for my PCP to figure it out but the...
  19. Deaminated Marcus
    The doctors seem to think that if we have a negative Celiac blood test then we can't have villi blunting but this web page says otherwise: Open Original Shared Link
  20. Deaminated Marcus
    Yes the CT scan can see the kidney stones. They used a CT scan when I went to the emergency dept. A previous moronic doctor had diagnosed my kidney stone pain as being "anxiety". Splenic flexure syndrome: do you get it at night only? I only get it at night towards the morning. I also felt it in my tranverse colon. I don't get it everynight...
  21. Deaminated Marcus
    I got disoriented with this post and the other one... I'm sorry to hear this is causing problems with your family. If you are short on money just do the DGP-IgG after you did the gluten challenge. PS: on the other posts you said you have C vs D. Calcium in milk or cheeze, can cause C. Magnesium supplements loosen C.
  22. Deaminated Marcus
    The gastroenterologist I saw last week said there is no link between Celiac and fibromyalgia (joint pain, body pain etc) I don' t agree with him. Sigh... why did I waste my time seeing that doctor. Sassbo, that is encouraging. I believe it's all food related.
  23. Deaminated Marcus
    Once you have the blood test requisition form in your hand make sure it's the tests you want. If it's not don't be shy to give it back to her if it's the wrong test. You are the boss. And you don't have to go the same day to the blood lab. You can wait till you've done your gluten challenge whatever amount of weeks you decide to do it.
  24. Deaminated Marcus
    Potatoes, rice, carrots are cheap replacements.
  25. Deaminated Marcus
    Were you eating gluten-bread before the blood test? For how long? Get a copy of the blood tests and post it here. Some posters have had false negatives till they got a copy of the report and saw that their doctor misinterpreted the results. ............................................................................................................
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