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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
    I wonder why your doctor did not order an IgA deficiency test as recommended by the Celiac UK organization? https://www.coeliac.org.uk/coeliac-disease/getting-diagnosed/blood-tests/ Find out. Get a copy of the lab report. If you had it and your levels are fine, then the TTG IgA test would be valid. Yes. Your result is normal and is negative...
  2. cyclinglady
    @Lou may— Exactly which celiac tests did the NHS run (I am in the US)? I can see the NHS site does not list the celiac tests. I guess they do not want to disclose extensive information to the general public (non-medical). It is probably a cost saving measure, otherwise, people might demand too much! https://www.nhs.uk/conditions/coeliac-d...
  3. cyclinglady
    Exactly what celiac tests were given? I am assuming it was just the TTG IgA which catches most, but not all, celiacs (like me). You could have an IgA deficiency, be a seronegative celiac or need other celiac tests (like the DGP or EMA). But something is elevating your IELs (but no villi damage) and you should determine the cause. Since that is most often...
  4. cyclinglady
    My take? Give up all bread for a while. You need time to forget what real bread tastes like and to get over the life-long assumption that you need bread to make a sandwich. If you are trying the AIP diet, then many of the ingredients you listed are not in the diet (like the grains). So, bread, even gluten-free, is not a healthy choice for the AIP diet...
  5. cyclinglady
    I can not speak for all your issues, but many of them fall under the Hypersensitivity (4 types) of the immune system. This is on Wikipedia, but it is pretty straight forward: https://en.m.wikipedia.org/wiki/Hypersensitivity Here is a YouTube Explanation. There are a bunch of them.
  6. cyclinglady
    Welcome! Maybe the two GIs did test you for celiac disease. There was period of time when I was diagnosed (5 years ago), that most doctors were just ordering the TTG tests only. They thought they were superior to the DGP tests. Problem is that they found that they did not catch all celiacs. You are lucky your GP ordered the both tests! A positive...
  7. cyclinglady
    Welcome! Here is some information: https://celiac.org/celiac-disease/understanding-celiac-disease-2/dermatitis-herpetiformis/
  8. cyclinglady
    I can not say (as member Gemini says, “I do not wear a white coat”), but Crohn’s typically presents in younger people. I assume your name includes 51 as either the year you were born or your current age). If so, celiac disease is more likely based on my research, but nothing is impossible. My niece did not have any of the typical Crohn’s symptom...
  9. cyclinglady
    I agree with the others. Here is my story..... My hubby went Gluten Free some 17 years ago per the poor advice of his GP and my allergist (they should have ordered a celiac screening). The gluten-free diet worked. Then 12 years later I went in for a routine colonoscopy (cancer screening, yeah...I am over 50), and the GI told me that he was going...
  10. cyclinglady
    Hi! The gold standard of diagnosing celiac disease is still done by obtaining biopsies through an endoscopy. Whoever gave you the celiac antibodies blood test, may have failed to to tell you that you need to remain on a full gluten diet until you can get an endoscopy. All celiac testing requires you to be on a gluten diet. Did you go gluten free...
  11. cyclinglady
    Yes, Tessa is right! Get to a GI for further testing. You do have an odd result, but it needs further investigation. Remember, some celiacs are seronegative and some are IgA deficient. Did your doctor run an Immunoglobulin A (IgA)? In celiac disease testing it it used as a control test to validate the IgA tests (e.g. TTG IgA). You may or may not have...
  12. cyclinglady
    My DGP IgA was the only positive on the celiac panel and I had some severe damage (anemia was my main symptom). I strongly recommend that you move forward and talk to a Gastroenterologist for a firm diagnosis. Why? The GI can not only identify damaged villi (great for a benchmark), but rule out other concurrent health issues. Biopsies via endoscopy is...
  13. cyclinglady
    In case you did not know, genetic testing for celiac disease is usually used to help rule out a celiac disease diagnosis. Some 35% of the population carries the genes that could turn into celiac disease (only a very few actually develop it). That is a lot of people! If you suspect celiac disease, consider a simple antibodies blood test from the...
  14. cyclinglady
    I think that if you want faster results and the fact that this really impacting your brain, you should consider the Fasano diet, which is eating only foods (whole) that you prepare. No eating out and no gluten-free processed foods. This includes even gluten free supplements, unless your doctor has found that you are deficient in something based on lab...
  15. cyclinglady
    Welcome! Your blood tests results were like mine with only the DGP IgA being elevated, yet my biopsies revealed moderate to severe patches of intestinal damage. Patches. Celiac disease can be patchy. It is easy to miss damage areas where you realize the small intestine is the size of a tennis court. I think you need to get copies of your records...
  16. cyclinglady
    If his scope could visually see The flattened villi, then his scope might be capable of taking photos. I had a recent endoscopy and my doctor handed me a photo during recovery. Consider requesting a copy of your medical file. Maybe he did take photos or maybe he mixed you up with another patient! It sounds like you are responding the the gluten...
  17. cyclinglady
    The endoscopy is the best chance of diagnosing celiac disease. It was used long before the celiac antibodies tests were developed. It is recommended by ALL celiac centers and ALL world-wide Gastroenterologist Associations. Of course there are times when it is not recommended for various reasons. And in your case...there is always the chance (not common...
  18. cyclinglady
    @Docsgirl I wish you the best. I think if you would have stated that you had been diagnosed with refractory celiac disease in your first thread, I think all this misunderstanding could have been averted. As I stated before, there is recent research that is showing that hidden gluten is being ingested by the most dietary compliment patients. ...
  19. cyclinglady
    I am not a doctor, but celiac disease typically affects the small intestine, but is considered systemic. So, other organs can be affected. Usually it is a result of malnutrition (inability to absorb nutrients). For example, anemia is common due to iron deficiency as is osteoporosis due to absorption issues (e.g. calcium, vitamin D, etc.). I can...
  20. cyclinglady
    Yes, a gluten free diet could be recommended but only after your GI has completed all testing (including the endoscopy). Why? Because your GI could miss damaged areas in the small damage as celiac disease can be patchy. The small intestine is the size of a tennis court when stretched out. Squirmingitches comments are spot on, but I think she missed...
  21. cyclinglady
    Many members here have had issues with enzyme deficiencies that (if I recall) resolve with the healing of celiac disease. I can speak for low acid. I had a repeat endoscopy (post five year celiac disease diagnosis) which revealed a healed small intestine (celiac disease in remission), but chronic autoimmune gastritis, which in my case, is definitely a separate...
  22. cyclinglady
    Who knows? This company is under McNeil which is under Johnson and Johnson. They were fined by the government in 2015 for $25 million for distributing KNOWN contaminates in their Infant Tylenol. Different drug same company. https://www.upi.com/Johnson-Johnson-subsidiary-to-pay-25M-fine-over-childrens-Tylenol-recall/4241426097337/ https://www...
  23. cyclinglady
    Celiac disease can create patchy damaged areas of the small intestine that can be missed or you might just be starting to develop celiac disease. Your GI was wise to refer you to a skilled dietitian who can help you master the gluten free diet. In a month or so, you should see some improvement (even slight) that will let you know that you are doing the...
  24. cyclinglady
    You know, try reading some member past postings. Use that little search box to your advantage. You will see a pattern of a member’s behavior. It is rare, but sometimes, a member might have an off day or intepret the written word that was not the original intention. I have made this error plenty of times! For the most part (and I have been a member f...
  25. cyclinglady
    I am so sorry that you could not enjoy your chili! I make it as well for my family, but I can not tolerate the peppers, onions, garlic either! Five years in and these intolerances have not resolved. Ugh! Hubby is gluten free and my kid is too while at home (I send her off with a gluten sandwich that she assembles herself at school). Do not feel...
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