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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
    Can you get a second opinion? Consider a challenge? I was officially diagnosed (4 years ago), but my hubby had doctors who advised him to go gluten free 16 years ago. We know that gluten makes him ill. He will not consider a challenge (we like paying our bills). He will say that I have had way more medical and family support. Karen is right...
  2. cyclinglady
    Some celiacs are chronically constipated, others are just have “normal” bowel movement and others have diarrhea. If I recall, your child had a positive on the DGP IgA (exactly how I tested). Are they going to retest?
  3. cyclinglady
    You need to go back and have your thyroid panel redone. Looking at old data from May is not useful. You could be running hyper. Yes, with Hashi’s you can swing back and forth from hypo to hyper. I had some pretty bad swings (pretty dramatic and quick) ) just before I was diagnosed with celiac disease. It drove my doctor crazy. I would be hyper o...
  4. cyclinglady
    Which antibodies are still high? Thyroid or celiac? I think your doctor may be wrong about the B-12. My levels were extremely elevated and I was not taking supplements. Turns out I was getting B-12 in soy milk. After a year of eliminating the fortified soy milk (which uses the cheapest form of B-12), my level went into the normal range. So, those...
  5. cyclinglady
    Heaven. That’s a gluten free restaurant. Ordering anything off the menu. No discussions about gluten free. No worries. Just dine and enjoy! I love 100% gluten free restaurants!
  6. cyclinglady
    Prescott is way too small of a town to support a 100% gluten free restaurant. I would look at Tucson. There are two completely dedicated gluten free restaurants. It is not as hot as Phoenix, prettier (Sonoran Desert), and is minutes from Mt. Lemon, so you can still experience pine trees and snow.
  7. cyclinglady
    Hang in there! Hugs!!!!
  8. cyclinglady
    Gene testing for celiac disease is just a tool to help RULE OUT a diagnosis. Why? Some 30% or more of the population carries the genes that develop into celiac disease, but only a few actually go on to develop celiac disease. You could be seronegative or you could be like me and test negative to the TTG tests. Consider asking for the rest of the...
  9. cyclinglady
    Did the allergist identify any allergies (IgE) at all? If not, consider Mast Cell Activation Disorder. Talk to your doctor about it. Open Original Shared Link I have no idea what is causing your swelling, but you should keep advocating for your health!
  10. cyclinglady
    Even if your complete blood panel (TTG, DGP and EMA) is negative, that does not mean that you do not have Celiac disease as some 10% of celiacs are seronegative. Trialing the diet will help confirm a diagnosis. Your doctor may order a genetic test. There are other things that can cause villi damage: Open Original Shared Link
  11. cyclinglady
    This is a bit off topic, but consider reaching out to the local celiac community. There just might be a celiac parent/grandparent who will take you under their wing and provide gluten-free care packages (meals or goodies) for you and some emotional support.
  12. cyclinglady
    I understand your desire to get through school. I still think your best bet is maintaining a strict gluten free diet. Your hemoglobin is just below range. That, in my non-medical opinion, is what determines your anemia and not your ferritin levels which are simply your iron stores. Without enough iron, your hemoglobin levels drop. I am always below...
  13. cyclinglady
    I am not a doctor, but several members have been diagnosed with EOE: Open Original Shared Link Consider talking to your doctor and getting tested for it.
  14. cyclinglady
    An independent gluten advocate, The Gluten Free Watchdog, (meaning does not take any sponsorship and has no financial ties to any product), is still advising against mechanically sorted oats. Why? Open Original Shared Link It is good to hear that the vast majority of companies are following gluten-free guidelines. That is very encouraging!
  15. cyclinglady
    Is it possible to get the the DGP IgA? It is the only positive I received, even in follow-up testing; however, I was very iron deficient, so that helped support my diagnosis (besides biopsies). I do not know if this will help, but my niece tested negative (she did have the complete panel). She also had the endoscopy (colonoscopy thrown in too) as...
  16. cyclinglady
    It sounds like you are doing everything right. Consider asking your doctor for follow-up antibodies. It is common to have this done three or six months after diagnosis and then annually. Open Original Shared Link It can time lots of time to heal. Neurological issues typically take longer. Most feel better after the first year. So.....hang...
  17. cyclinglady
    Welcome! Everyone is different. That said, I experienced GERD the last time I was exposed to gluten. I have many drug allergies, so I basically toughed it out. I elevated my head at night, did not eat hours before bedtime, avoided slouching, and waited to heal. I also went to my safe gluten-free diet of soups and stews (easy-to-digest) until I healed...
  18. cyclinglady
    Celiac experts came up with a standard for food manufacturers to follow and to keep most celiacs safe. So, they determined that 20 ppm is a safe threshold for a majority of celiacs. Notice it is a majority — not all celiacs (Read the supporting studies and the FDA guidelines. When a celiac is not responding to the gluten free diet, experts have developed a...
  19. cyclinglady
    That was me! I have only tested positive on the DGP IgA, even on follow-up tests. My biopsies revealed moderate to severe patches. So....keep eating gluten until you get that GI consult. I have researched this endlessly. It appears that only the very young and the very old seem to test this way. I am neither. There is a reason that there are...
  20. cyclinglady
    Your doctor can not rule out celiac disease without 1) doing the complete panel which includes the DGP and the EMA and 2) even if negative (some 10% of celiacs are seronegative), and celiac disease is still strongly suspected, intestinal biopsies are ordered to confirm or disprove a diagnosis. The gluten-free diet can be beneficial to see if symptoms...
  21. cyclinglady
    Am I not getting it? According to the link, Health Canada is just saying that any food, even cereal, is considered safe for the majority of celiacs if under 20 ppm. What does this have to do with Cherrios?
  22. cyclinglady
    Well, the article posted by celiac.com seemed to just repeat all the press releases. Hopefully, the next article can shed more light in the subject. Open Original Shared Link I do think that General Mills (GM) opted out due to conflicting testing requirements. It looks like they are part of a group (manufacturers, scientists, etc.) that reviews...
  23. cyclinglady
    Welcome! I am not a doctor nor did I ever have genetic testing, but in all my research, genetic testing for celiac disease is to help RULE IT OUT and not to diagnose. Why? Some 30% (or more) of the population have the genes that could develop into celiac disease. COULD. It is not common. So, you have a slight chance of developing celiac disease...
  24. cyclinglady
    It sounds like you might have been gluten light, so that can impact test results. Please do not settle for an IBS diagnosis. It often means “I be Stumped”. I had NO digestive issues when I was diagnosed, but I did have anemia. Celiac Disease has about 200 symptoms attributed to it and depression is one of them! Keep advocating for your hea...
  25. cyclinglady
    You need to get another GI opinion. I am not a doctor, but it really seems like you have two celiacs in your household. I do not know why doctors are so reluctant to diagnose celiac disease until there is severe damage.
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