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cyclinglady

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cyclinglady last won the day on November 12

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About cyclinglady

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  • 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

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  1. Karen has great advice. I always have non-perishable food in my purse. Often I carry a small cooler and throw in veggies, nuts, yogurt, meat, or fruit to keep in my car while running errands or meeting up with friends. I have nicer tote coolers that looks more presentable (nothing sends out geeky signals when carrying an Igloo cooler). Still use the heavy-duty coolers as I live in in sunny California and I do not want food spoilage and i can transfer food to a prettier version. I used my pretty coolers to conceal my favorite soymilk when I went to Starbucks (preferred my brand over theirs) when hanging with the girls. Now i can consume milk products, so no need to do that. When we vacation, we mostly eat at grocery stores. It is a fall-back option for us. Our coolers travel even internationally with us! And my favorite restaurant where i feel the safest? Our recreational vehicle. If we can not find a restaurant, we can always pull over and eat a hot meal. Heaven!
  2. My sister-in law gets these all the time. Sun and stress are her triggers.
  3. Remember, the celiac tests are not perfect; hence, the continued recommendation to diagnose with a biopsy. You did not go that route. Your blood tests were convincing. The gluten-free diet should also be viewed as another "test" to detemine your diagnosis. So, you have been talking about blood test numbers. How are your symptoms? Improving? Do you think you are adhering to the gluten-free diet (that could explain the rise that you were concerned about). That is what is important. Sticking to the diet, because celiac disease is not cureable and the diet is the only solution at this time. We just have to move forward and deal with it. I am thankful that my symptoms are not just "all in my head". My heart goes out to those struggling to get a correct diagnosis. The good news is that your lab tests are showing improvement, so you must be doing something right! Keep up the good work!
  4. The celiac panel (blood test) is comprised of several tests. You may have just had the TTG IgA and the IgA control test.
  5. Welcome! Symptoms vary with those with celiac disease. It is why a diagnosis is often so hard to get. You said that you tested negative on celiac testing. I would confirm whether or not you had a complete celiac panel or just a screening test: TTG. Here is the full panel: -Tissue Transglutaminase (tTG) IgA and (tTG) IgG -Deamidated Gliadin Peptide (DGP) IgA and (DGP) IgG -EMA IgA -total serum IgA and IgG (control test) -AGA IGA and AGA IgG - older and less reliable tests largely replaced by the DGP tests -endoscopic biopsy - make sure at least 6 samples are taken VERY IMPORTANT: Keep eating gluten daily until ALL testing is complete or the tests can be inaccurate. (Source: NVSMOM -- 😊) Why do I ask about the full panel? The screening TTG does not catch all celiacs. With a Grandmother who has celiac disease, you should get a full panel. Gluten does not stay in the system. It passes like any other food. For celiacs (autoimmune disorder that attacks the lining of the small intestine), eating gluten can trigger an autoimmune flare-up that can last for days, weeks and months!!!
  6. Welcome Ware96! Everyone has different ways of coping with an accidental glutening. For me, I try to cut back on activities and eat soft well-cooked (even fruit) foods that are easy to digest. Think stews and soups. Cut out all processed food as much as possible until you feel better. I become temporarily lactose intolerant after a glutening too. Frankly, eating anything can hurt! Remember, celiac disease is like lupus, MS, RA, Hashi's, except we know the trigger for celiac disease -- gluten. An exposure can cause a "flare-up" (your body starts attacking your small intestine) that can last for days, weeks, or months (it is about three months for me). Each exposure can result in different responses, oddly enough. Read out Newbie 101 tips under the "Coping" section. I think you will find it useful. We are here to help each other! 😊
  7. I think you can have celiac disease and an allergy to wheat. But since a functional doctor diagnosed your wheat allergy I would be leary. Here is why. Was the testing IgE or IgG? There is a difference. From what i read (i am not a doctor or scientist), IgE responses can cause anaphlyatic responses. The IgG is more like an intolerance. To me, allergies are hives, swelling, nasal, breathing, ab pain, low blood pressure, fainting, and vomiting (epi pen can be needed) -- scary and can be immediately life-threatening. The IgG response may be harming you , but it won't kill you fast. But there are other members who can better explain it to you. But really, gluten covers the wheat allergy. No gluten and you are safe. 😊
  8. Consumer Reports rates this diet very well. My SIL has been on and off it several times. Long term effectiveness? I don't know. I can tell you a low carb with fat diet took pounds off me and my blood sugar loves it. I try to "eat to my meter". Easy to do when the holidays are NOT upon us. 😊 My sweet tooth is back. So hard to give up those foods when family is eating them. Not to mention making up for all those years of not being able to eat ice cream and egg nog (four bottles in my frig now). (Dang, that Strauss' Organic nog without any gums is fantastic. I will not touch the other brands that taste artificial or have gums. I try to portion it out or workout after drinking it. Someone else at Sprouts trys to load up on Strauss' per the dairy employee. It would be fun to meet this person who is like-minded about egg nog.). I digress..... I like eating to my meter (cheap meter at Walmart). Nothing puts a halt to eating when you read post paradial (sp?) readings over 140. The meter does not lie. I can tell myself that gluten-free cupcakes are okay to eat, but my meter tells me differently. Falling off the wagon? I start testing again. Mind you i have never been heavy. BMI always normal. Nothing like a glutening to drop a few dress sizes (but that is NOT good weight control). But that stubborn 10 pounds i gained after baby and hitting perimenopause at the same time (40) refused to budge (unless i was riding hundreds of miles per week), dropped on a LCHF diet. Meno pot? It is all about food and eating too much -- not age like I thought. 😒 Seriously, just maintaining my gluten-free and diabetic diet is the most important thing. A few pounds might not make me look good, but i like feeling good. But that is a perspective coming from a 55 year old, an age where you realize that you do NOT CARE what others think about you. So liberating (one good thing about menopause). 😄
  9. Just make sure you daughter gets the complete panel. Often providers only allow first-line doctors (GP, PCP) to only order the TTG tests. Kids often test better on the DGP. That may mean insisting on a GI referral. This should not be an issue since you had positives. You can see why now that an endoscopy can help in more ways than one (firm diagnosis and thrfore helping first degree relatives, etc).
  10. Are you sure it is the avocado? What about the garlic or onions? Are the spices gluten free?
  11. Welcome to the forum! You have a positive on the celiac panel. Your doctor should have referred you to a Gastroentrologist for further testing. Celiac disease is not a gluten allergy. Celiac disease is a autoimmune disorder that is triggered by gluten. Other autoimmune disorders like thyroiditis, lupus, MS and RA have unknown triggers. http://www.cureceliacdisease.org/screening/ If you are still consuming gluten, consider testing. If you have been gluten free since 2015, read our "Newbie 101" coping section to insure that you are gluten free compliant (plus, great tips). As for cancer, that is one thing your doctor (and i would get a new one) got right, but cancer is really rare.
  12. Thank you for sharing! Your posting will help many!
  13. Were these the result of a second biopsy done in 11/2016 or 12/2016?
  14. Shannon, My heart goes out to you! With two little ones and the holidays soon approaching, I can imagine the stress and anxiety you must be feeling (and made worse by being ill). You need help! Take a few minutes to make a plan of all your activities and chores. Then start crossing off a few if possible. This is the time to simplify. Buy cookies -- don't bake. Cut out any extra entertaining. Do not volunteer for anything (let those other parents help at church and school). Do you have any family members who can assist you? Clean your house? Watch the kids while you shop? Hire a mothers helper? (I paid a 6th grader to watch my child while i paid bills, etc. In the other room). Keep menus very simple, etc. The holidays are meant to be enjoyed. It is all about the people in our lives and not the stuff! Your kids are little and will not know the difference if a few corners are cut. Hugs!
  15. dMason might be too young to recall Chinese Baby Formula that had Melamine in it and killed and sicken so many Chinese children. It has just been 10 years, but I do not buy food items (even from American parent companies) from China. I hope China's food supply has improved, but do i need to take additional risks? http://rendezvous.blogs.nytimes.com/2012/06/21/from-milk-to-peas-a-chinese-food-safety-mess/?rref=collection%2Ftimestopic%2FMelamine&action=click&contentCollection=timestopics&region=stream&module=stream_unit&version=latest&contentPlacement=6&pgtype=collection