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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
    Consider getting the entire celiac panel. If my GI had not ordered it, my diagnosis would not have been made. I test positive to ONLY the DGP IgA, yet my biopsies revealed severe damage. Even in follow up testing, I have never had a positive on the EMA or common screening TTG. The DGP is thought to be better in small kids and who knows why I test out...
  2. cyclinglady
    This article is written by a celiac who also has DH (thus she has to be a bit more careful). She is pretty conservative, but I like what she writes: https://www.verywellhealth.com/does-coffee-contain-gluten-562352 Me? I drink Yuban brewed. I just drank some packaged Starbucks Decaf this afternoon that I purchased at Target and brewed at home...
  3. cyclinglady
    At least there is some awareness. Personally, I would rather stick to a larger company if it is on a shared line with good manufacturing cleaning processes. It sounds like this small company is not in charge and places their trust with their supplier. If in doubt, I choose companies who test their end product. This company does not. Consider...
  4. cyclinglady
    That is a relief! But it is still weird that your GI wants you to go gluten free and then retest in four weeks. Normally, a doctor would have you remain on gluten and then retest to see if you get a more positive response in the lab test (at least that has occurred often per forum members). Are you sure she said to go gluten free? Did she provide a packet...
  5. cyclinglady
    Like me, Posterboy and I enjoy researching health topics. Our acquired knowledge does not qualify us to issue medical advice. In fact, it is against the law to issue medical advice without a license. We are allowed to share how we manage our celiac disease or gluten intolerance and offer support on this forum. Pellegra is no longer an issue...
  6. cyclinglady
    Just putting you on thyroid replacement without looking for a cause is wrong in my non-medical opinion. Did your doctor even feel your neck? Ask for antibodies testing. https://www.thyroid.org/thyroid-function-tests/ Knowing if you have Hashimoto’s Thyroiditis can help you determine other potential issues down the line. Once you develop one a...
  7. cyclinglady
    Funny that the package label does not mention wheat, but their website product description does. Which is it? In any case, dedicated oats are best, provided you are not one of the celiacs who react to any kind of oats. This topic is pretty controversial, so personally, I am waiting to see where the oat dust settles. I have noticed an increase in...
  8. cyclinglady
    Why are you hypothyroid? Were your thyroid antibodies ever tested? Maybe your primary care physician can run that for you. Autoimmune thyroiditis, type 1 diabetes and celiac disease are strongly linked. You are borderline and I am not even sure she ran the correct anti-gliadin test. It should be “Deamidated”. You test might be outdated. The old...
  9. cyclinglady
    I think your doctor just thinks your test result is a fluke. Most celiacs do get a positive on the TTG tests, but not all. I am one of the few that only tests positive to the DGP IgA, yet my intestinal biopsies revealed some pretty severe damage. Your result should have prompted your doctor to refer you to a Gastroenterologist. Perhaps we do not...
  10. cyclinglady
    My repeat endoscopy occurred five years after my initial one. At that time I did not have gastritis (no GI symptoms) and H.Pylori was ruled out then and now. I did have a polyp which occurs with gastritis, and probably caused my doctor to biopsy it. The pathologist diagnosed my gastritis. The GERD I experienced never happened between years one...
  11. cyclinglady
    When were you diagnosed? If it has been more than six months, ask your doctor to run another antibodies panel: http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/ There is a steep learning curve to the gluten-free diet. It sounds like you have it down though. I would not worry about non-responsive celiac disease, but...
  12. cyclinglady
    My hubby is not diagnosed. He was gluten free 12 years before I was diagnosed with celiac disease. If a gluten free diet works, then keep at it. Good health is priceless! You might have Dermatitis Herpetiformus (DH) which is a celiac skin-rash. In that case, read through the DH section. Those celiacs who have DH must be super strict on the gluten...
  13. cyclinglady
    If I recall, you also have autoimmune thyroiditis. As a result, your recent glutening could have triggered or aggravated a conditioned called Chronic Autoimmune Gastritis. This type of gastritis can come and go (flare) like any other autoimmune disorder as the trigger is unknown (unlike celiac disease which we know gluten is the trigger). Your doctor...
  14. cyclinglady
    You have been given some excellent advice. Even though all celiac testing does require a patient to be on a full gluten diet, it sounds like your child might be too ill to do this. In this case, I would need the advice of the PED. The GI May make take a different route in diagnosing your son. Most of us shudder at the thought of a gluten challenge because...
  15. cyclinglady
    If you continue to stay on gluten, consider getting tested in six weeks for celiac disease. NCGS and celiac disease can share the same symptoms, but only intestinal damage occurs with celiac disease.
  16. cyclinglady
    This additional information certainly points more towards a celiac disease diagnosis.
  17. cyclinglady
    It certainly sounds like gluten is an issue for you. While some celiacs do cheat, they risk not just triggering celiac disease but potentially developing an another autoimmune issues. This is so not worth it. Maybe make a video and record when you are really ill. I hope you figure out what is best for you! Take care.
  18. cyclinglady
    The last time I checked, they were not. You only need to be concerned with lip glosses, shampoos, and hand lotions unless you have an actual wheat allergy. Celiac disease is triggered only by consuming gluten and these items might be accidentally ingested.
  19. cyclinglady
    I am sorry she is in pain. Healing from celiac disease can take weeks, months to years. Why? The gluten free diet has a steep, learning curve and mistakes are made. There can be collateral damage (for me it was anemia, fractures, and osteoporosis). Be patient. Do not eat out until she is well. See if lactose is an issue (it usually resolves once...
  20. cyclinglady
    I am formally diagnosed, but the funny thing is that 12 years prior, my hubby went gluten free per the advice of his GP and my allergist. The diet worked. Later, I was pretty shocked when I was diagnosed. What are the odds? Does my hubby have celiac disease? Who knows? Autoimmune runs strong in his family (our kid is doomed). He refuses to...
  21. cyclinglady
    A positive on a celiac blood panel should be investigated further by a GI. The complete celiac panel should be run. It may provide more answers. What is your definition of stunted growth? How Immunoglobulin A (IgA) deficient is she really? The IgA test result for celiac disease diagnostic purposes needs to be really close to zero in order to invalidate...
  22. cyclinglady
    Sorry, I never had the genetic test. It looks like you have some genes identified with celiac disease based on what you posted. But this simply means that you are one of 35% of the population who has those genes. But only a tiny few actually go on to develop celiac disease. The celiac blood tests that check for antibodies can be more helpful in...
  23. cyclinglady
    A gluten challenge can be very difficult. I guess that is the reason, celiac experts call it a challenge! Challenges should be under a doctor’s care. A slice of bread or two a day for a period of six to 12 weeks is recommended. Why? Everyone builds antibodies at a different pace, so being conservative is the best approach. The challenge is only t...
  24. cyclinglady
    Only pots like cast iron need to be placed in a very hot oven (think cleaning cycle) as they are porous and can retain gluten. If your pots are stainless and are not deeply scratched, a good scrubbing will insure that all gluten is removed. I would not put my stainless in very hot oven!
  25. cyclinglady
    Intestinal damage is often spotty and can be missed. We just had a new member diagnosed via a camera pill. His damage was beyond the reach of the endoscope. Please consider getting all the medical records and lab reports. More than four biopsies should have been taken and at the appropriate areas as recommended by celiac centers and the American GI Group...
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