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cyclinglady

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by cyclinglady

  1. cyclinglady
    Get On the Kaiser site and start looking for a Kaiser GI who is celiac-savvy Even if he/she is not a Ped GI. At least they can refer to the Ped GI later. I am not sure a regular Ped will refer. He might just say it was a fluke since the TTG IgA was not positive. But I can tell you that I only test positive on the DGP IgA and never the TTG tests. ...
  2. cyclinglady
    He has an elevated TTG IgG. It only takes one positive on the celiac panel to move forward. Again, document with Kaiser. Keep researching. I can not say he has celiac disease, but something g is wrong. Read this article. Jebby (aka Jessica) is a member and is a preemie doctor. She has celiac disease and advocates for the community: Open...
  3. cyclinglady
    Kaiser, like so many providers, usually only allows the TTG to be ordered as an initial screening at the PCP level. The problem is that although the TTG is very good it does not catch all celiacs, especially small children. The DGP and EMA tests should be ordered. An IgA (Immunoglobulin A) deficiency test should be ordered as well. It is used as a control...
  4. cyclinglady
    So glad that you are feeling better! It is a shame that you might have been misdiagnosed. The full celiac panel should have been run. Doctors should know that some patients are simply seronegative and in those cases, an endoscopy should be ordered. If my doctor had only ordered the screening TTG, my own diagnosis would have been missed. This is...
  5. cyclinglady
    Well, you might really have the flu! We tend to blame everything on celiac disease (I have). But if you are sure it is a glutening, it probably is. I can tell you from personal experience that my symptoms have dramatically changed over the years. When I was diagnosed, I had anemia and no GI issues. Now, I get vomiting, abdominal pain, hives, the works...
  6. cyclinglady
    Some of these members have not been around for a while. You can check out Jebby’s blog site. She is a Neonatologist and also has celiac disease. Her website might have some current information on this topic. http://www.jessicamaddenmd.com/
  7. cyclinglady
    Welcome! Two months into the gluten free diet is a really short time. There is a huge learning curve to the diet and that can slow down healing (getting accidental gluten exposure due to mistakes). Most celiacs here can take up to a year to heal depending on the collateral damage. Eating almost anything can hurt to digest when you are first...
  8. cyclinglady
    It is a simple blood test, so I would have them both screened based on the symptoms you mentioned. Try to insist on the full celiac screen that includes the DGP tests. Those seem to work in smaller children. Open Original Shared Link Keep in mind that he could also have a concurrent wheat allergy. Google EOE which is an allergy that involves...
  9. cyclinglady
    In the case of celiac disease testing, the Immunoglobulin A (IgA) is used as a control test (to see if the IgA celiac test work). Your result is just out of range, but it is valid for celiac testing. Keep in mind that some celiacs are seronegative, if the GI suspects celiac disease you would proceed to biopsy via endoscopy. You might not have...
  10. cyclinglady
    Without seeing the actual label on the bottle, I can not say. Try asking the pharmacist or calling the manufacturer directly.
  11. cyclinglady
    Any doctor can run a celiac blood panel. Here are the tests: Open Original Shared Link You do sound like you could have celiac disease, but could have concurrent issues as well. Check out EOE as well. It is allergy-related. Open Original Shared Link I am not a doctor — just a lady on the Internet. ?
  12. cyclinglady
    Oh, no! When my ferritin was a 2, my old GP, did not recommend iron infusions for a variety of reasons. I recall he mentioned that they left permanent marks at the IV site. Running should not cause that much iron loss (e.g. heal strikes), unless you are doing those century runs. You should find out the real cause. In the meantime, give up or reduce...
  13. cyclinglady
    Oh, so sorry you became ill. We rarely eat out. When we do, we try to find restaurants recommended by celiacs (like “Find Me Gluten Free”). We read the reviews, if a few celiacs are happy and did not get sick, we’ll take the risk. I hope you recover fast!
  14. cyclinglady
    Consider getting a celiac blood test. It is a good place to start and might be easier than getting a skin biopsy which must be done by a DH-savvy dermatologist. The blood test can be done by any doctor. Learn more: Open Original Shared Link
  15. cyclinglady
    I agree. If you know gluten makes you sick, you avoid it at all costs. My hubby is not formally diagnosed, but he has been gluten-free for 17 years, 12 years before I was formally diagnosed! Does he cheat? NEVER! Is he some kind of stoic person with a will of iron? No. I do fall off the diabetic bandwagon though. Because those efforts are preventative...
  16. cyclinglady
    Did they biopsy the stomach and identify the type of gastritis? Hemoglobin of 7! That can make you very tired and difficult to catch your breath. Been there!
  17. cyclinglady
    Like celiac disease, everyone is a bit different with MCAS. Symptoms and triggers vary. I do not carry an EPI pen because my symptoms have not compromised my airway. I have passed out many times, had very very low blood pressure, hives, swelling tongue, stuffy nose, abdominal pain, vomiting, itching, etc. Since my triggers are known and easy to avoid...
  18. cyclinglady
    What was the cause of the gastric bleeding?
  19. cyclinglady
    Have you trialed the gluten free diet? Positives in both the TTG and the DGP rue sound like celiac disease. Maybe the GIs missed the damage. The small intestine is like the size of a tennis court. My own little niece was diagnosed with Crohn’s (celiac disease firmly ruled out for now) after a pill camera reveal severe intestinal damage located beyond t...
  20. cyclinglady
    Your Immunoglobulin A (IgA) is low or below range, but it is enough to determine if the celiac tests work. It would have to be close to zero. So, two negatives is probably correct. However, some celiacs are seronegative. Some, like me, do not test positive to all the celiac tests (DGP, TTG and EMA). (I test positive to only the DGP). Some people at...
  21. cyclinglady
    Welcome, MamaDog! Thank you SO much for sharing. We need more DH members sharing their history and treatment.
  22. cyclinglady
    My allergist put me on antihistamines daily (H1 and H2) because I had stomach issues. I also reduced the amount of histamine I ingested for a week or so, but the medication helped the most. My hives would start with ab pain, then they would start with my head itching, then my arms, abdomen and finally legs and feet, even the bottom of my feet. Thousands...
  23. cyclinglady
    Do antihistamines help, at least with the itching? Whealing, I itching and spreading quickly throughout the day could be autoimmune urticaria (hives) or mast cell activation syndrome which could be triggered by her recent gluten upset. Oral antihistamines (avoid Benedryl/other first generation antihistamines) help. Remember food allergies and other IgE...
  24. cyclinglady
    I have pre-cooked ground beef, carnitas and shredded chicken always in my freezer portioned for fast family dinners. I can make tacos, spaghetti, chicken enchiladas, chicken a la king, soups....the list is endless. Last night, I pulled out a rack of ribs that I had prepared (seasoned and baked) a while ago. Just had to thaw and throw it on the grille...
  25. cyclinglady
    I think that the “proof” she has celiac disease was her very high TTG result at diagnosis and during follow-up testing it has declined dramatically on the gluten-free diet. The TTG can be elevated due to other illnesses, like Crohn’s but that elevation is usually barely positive and not a result over 100 from my research (I am not a medical doctor). ...
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