• Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

cyclinglady

Moderators
  • Content count

    5,838
  • Joined

  • Last visited

  • Days Won

    170

cyclinglady last won the day on November 16

cyclinglady had the most liked content!

Community Reputation

769 Excellent

About cyclinglady

  • Rank
    Advanced Community Member

Profile Information

  • Gender
    Female
  • Interests
    CD diagnosis: 3/2013, DGP IgA positive only, Biopsy: Marsh Stage IIIB,
    Hashimoto's Thyroiditis, Diabetes, Osteoporosis, Thalassemia
  • Location
    Orange County, CA

Recent Profile Visitors

19,423 profile views
  1. Yes, even with a positive on the genetic test and feeling better on a gluten free diet, does not mean you have celiac disease. You could have a sensitivity (all the symptoms, but no intestinal damage) or you could have issues with FODMAP foods (wheat is one of them). The gold standard is still the intestinal biopsy. Again, if your antibodies were super high, then odds are you would have celiac disease. Really nothing elevates celiac disease antibodies super high other than celiac disease. They might be slightly elevated for other autoimmune disorders. I will share my story. My hubby went Gluten Free 16 years ago per the POOR advice from our GP and my allergist. Oh, the diet worked after a year of adjusting and making mistakes. But does he really have celiac disease? We do not know and he refuses to do a challenge. Feeling good trumps feeling sick. Me? I went in for a routine colonoscopy (yep, I am over 50) 12 years after my hubby went Gluten free. My GI looked at my chart and noted my life-long issues with amenia. I have two kinds of anemia (one is genetic). The iron-deficiency anemia is what my GI noted. Despite repeated supplementation, I still had it even after going through menopause. He ordered a full celiac antibodies panel. He scoped me from both ends and found intestinal villi damage. No disputes. FOR SURE. And I needed that diagnosis because I did not have GI issues at the time and worse yet, I knew exactly how a gluten free diet was going to impact my lifestyle. You bet I was in denial, but the lab results do not lie. My hubby would be the first to tell you that I get more support from family, friends and medical staff. They believe me. Him? Some doubt (but we know better). With my diagnosis, I was able to get the full celiac panel for my daughter and have her thyroid monitored). No fighting with her doctor or insurance because celiac disease is definitely genetic. Two months into my diagnosis, I fractured my back doing NOTHING. Yep, I had osteoporosis thanks to celiac disease. It has been easy to get vitamin deficiency tests, bone scans, etc. because I have a diagnosis. Even my new GI has been supportive especially since I gave him hard copies of everything for the past 20 years with a summary cover sheet. The cold? My SIL was always cold. Her thyroid was and is fine. Now she went through menopause. She is always hot now. Having flashes, wearing light layers and even wearing her hair up. So, you might have to wait a few decades. 😆 to get relief. The problem with autoimmune issues is that symptoms often overlap. My doctor and I suspect another AI issue, but what am I going to do? Take drugs? No. So I just keep moving forward. That is something else to consider. Just keep in mind your family history and get tested if needed. You know your particular set of health circumstances. Only you and your doctors can make the best course of treatment for YOU.
  2. Headache

    Hope you feel better soon. I can not take any NSAIDS or acetaminophen because I am highly allergic. So, I can not help you with brands, but someone else might. Target often has OTC products that are clearly labeled gluten-free.
  3. Headache

    If you think the cause if your headache is allergies, consider taking an antihistamine. Try to solve the root cause instead of just relieving the symptom.
  4. Hi! Lots of questions. I recommend continuing your research on both subjects, but I will try to help. 1. Gluten challenge: http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ 2. Endoscopy in two weeks after a gluten challenge? Sure, if you can find a GI who would do it based on blood tests and/or symptoms. Often insurance dictates. 3. Genetic testing. This is used to rule out celiac disease. Some 30 to 40% of the population carries the genes, but only a tiny few go on to develop celiac disease. So, not good for diagnosing celiac disease. It can be used if parents want to avoid an endoscopy on their toddlers/children when they have a positive blood test. It can be used for first-degree relative to use to opt out life-long future celiac disease testing. I will not even get into the fringe genes that have yet to be discovered or made well-known. And...think about what future insurance may do with that information? I have been on the rejection end of health insurance with a few simple ailments! So be careful! Hashi’s. You could ask for antibodies testing and a full thyroid panel, Again, hard to do often based on insurance parameters. You are simply cold. (Got a blue fingers or toes? Really blue, like scary blue? That is another autoimmne disorder that is not curable). Any nodules, thyroid enlargement that could make your doctor/insurance look beyond a normal TSH? Even if positive, there is not much you can do if you have a normal TSH and the rest of your thyroid functioning process is okay. Supplementing might make you hyper which in my opinion, is much worse (having been hyper and hypo). Keep researching so that you can make informed decisions. If all else fails and you still want to investigate, order and pay for the lab testing cash yourself.
  5. Welcome! Here is more information about a gluten challenge: http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ I would personally go for the maximum amount of tine and would consume as much gluten as I could tolerate 1 to 2 slices a day. Why? Researchers really do not know who builds antibodies fast. Some can do it in as few as a few weeks and others take much longer. Where do you fit? You do not know, so considering the maximum recommendation. Do not be horrified about your doctor googling. That is an excellent sign, in my opinion. My neighbor is an ER doctor. He googles all the time and combining that with his vast medical training and work experience, allows him to quickly help patients. There is no way a doctor can know everything about disease and treatment. I wish you well!
  6. I have not found any that are reasonable (a gluten-free kit is available on Amazon and they want $50 ). Either you make the GINGERBREAD walls from scratch (gluten free) or just use cardboard as a base and “glue” on gluten-free gram crackers or “stucco” (fondant) with frosting or We never eat the end product; however, the kids consume plenty of decorations while it is assembled. I would not recommend handling a gluten gingerbread house. It is too crumbly and the risk for cross contamination is great. So, make a gluten free version or create a new holiday tradition.
  7. Looks like you tested negative on the celiac blood tests. Who ordered the tests? Reticulin has not been used for more than a decade. This makes me think that your doctor may not be so celiac-savvy. Why does that matter? Some 10% of celiacs are seronegative. If celiac disease is strongly suspected, a GI might want to confirm with an endoscopy. Also, you did not say how long your gluten challenge was before that last blood test. A challenge requires a person to be on a gluten diet for 8 to 12 weeks: http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Do you have any risk factors, like family history, another autoimmune disorder, IBS? https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220 It seems like the Gluten Free diet is helping your current symptoms of joint pain and rashes. So, then you would be considered Non-Celiac Gluten Sensitive/Intolerant. That diagnosis is done when celiac disease has been ruled out. I can see why he recommended the gluten free diet. You felt better! You are going to have to decide if pursuing a celiac disease diagnosis is necessary for you. I wish you well.
  8. Some people, like me, never get a positive on the TTG (even on follow-up Testing) and I stated that some celiacs (10%) have negative tests results period. Your doctor is doing the colonoscopy. Ask him if he is going into the small intestine via that route.
  9. Not necessarily. I am from the US and testing varies. It can be driven by expense. So, I would check.
  10. The problem is no one really knows how fast antibodies can go down. Researchers/experts have found that they can go down in as little as two weeks, but for some it can take a year or longer. So, to be safe and to insure a correct diagnosis, experts recommend a full gluten diet 8 to 12 weeks prior to a blood draw. Keep us posted. I am so happy for you. Keep up the good work. 😊
  11. Well, exactly what celiac blood tests were done as there are several (TTG, DGP, EMA)? The TTG is the most commonly given test for celiac disease. Unfortunately, it does not catch all celiacs (like me). Then about 10% of celiacs are seronegative. It is good that your doctor ordered a colonoscopy, but the small intestine can not always be accessed in this procedure. An endoscopy is most used for celiac testing. I imagine your GI is trying to rule out IBD. So, find out what celiac tests were taken and clarify the scope. You can not go by symptoms because they can overlap with so many other illnesses. I hope you feel better soon. Learn more: http://www.cureceliacdisease.org/screening/
  12. Costco does. It is clearly labeled gluten free. The chicken guy does NOTHING but chickens. He unloads factory seasoned chickens in a dedicated area and puts them on the skewers, load the ovens, takes them out and packages them. I would worry more about low volume grocery store chickens. Their staff wears many different hats. That said, you can make a cheap version right at home an Instant Pot or oven (if you have more time). Get the chicken on sale. I do this because Costco adds garlic to their seasoning. I can not do garlic!
  13. Help Converting a Recipe!!

    It is not a lost cause! Just make sure you include a Gum, like Xanthan Gum, that replaces the “gluten”. You can buy that separately. Some flours, like Pamela’s, already have a Gum added to their flour mixture. This is hard to explain, but use a little less flour (e.g. 1/4 cup). You can always add more when converting from a regular gluten recipe to a gluten-free one. Mind you, gluten eaters will notice a difference, but they will still be delicious. gluten-free baked goods do not last long on the counter, so freeze them. gluten-free dough tends to stick, so use parchment paper (or those little liners for the muffin tins).
  14. Confused?

    Welcome! Recovery from celiac disease can take a lot of time. Most members report that healing took months to a year or longer. It all depends on the systemic damage that occurs throughout the body and we all have different issues. It also depends on how fast you learn the gluten free diet which typically has a steep learning curve. Check out the Newbie 101 thread at the top of the “Coping” section. It contains valuable tips. We are here to help each other. 😊 Best advice? Be patient (so hard.......)
  15. Maybe I will see you on this cruise..... http://glutenfreecruises.com/budapest-gluten-free-cruise-2018 or this: http://bobandruths.com/gfgetaway.html All 100% gluten free! 😊 Seriously, I would love to go to an adult celiac camp. No luck. No time this year, but I will be on that gluten-free cruise in the future!