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Judy3

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Judy3 last won the day on January 26 2011

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About Judy3

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    Advanced Community Member
  • Birthday 09/26/1957

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  • Gender
    Female
  • Interests
    Reading, cooking, movies, music of all kinds, walking, hiking, bike riding. Laughter, Soft blankets, fuzzy kitties and the smell of freshly cut wood.
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    WI
  1. You could very well be gluten intolerant and not Celiac. Celiac causes the damage he was looking for, gluten intolerance does not although the symptoms are much the same if not identical. If I were you, with those numbers for IgA and IgG as high as they are I would try gluten free for a month now that you've had the tests and biopsies and see how you feel. If it helps continue, if it doesn't pursue other things. Just my opinion but your numbers suggest Celiac and the endoscope showed no damage so I think you maybe do have Celiac. I would go for genetic testing, it's expensive ($400?) but it will tell you one way or the other. A person has to have one of the two genes associated with Celiac to have it. https://celiac.org/celiac-disease/diagnosing-celiac-disease/
  2. I would agree with you that putting a child under for a test would normally not seem right but in this case she probably has Celiac based on the test results you show above so a positive endoscope is the only way to get a confirmed diagnosis. For the rest of her life without a definite diagnosis it would be difficult for her and for you in social situations and with new doctors. This way you know. I was not diagnosed until adulthood and suffered a lot over the years with everyone's 'home diagnosis' and treatments for what ever ailed me. Had they done the tests as a child (they probably didn't have as good of tests when I was a kid) my life would have been different. Now that I'm diagnosed and gluten free life is pretty good. I would have the endoscope done , it's a one time thing and then you know. Better to attack life with knowledge than ignorance. Good luck
  3. Hi Foxtrot, welcome to the board. My thoughts on your situation and questions. First of all, Celiac is a lifetime disease, it won't go away. You will need to be 'completely' gluten free because even a little will cause symptoms and damage to occur. Some people, myself included are very sensitive to even a crumb or two... After only a week, you may see some improvements but it could take months for you to recognize that you are feeling better all around. Stick to absolutely gluten free and be careful of cross contamination. If you live in a house where others are eating gluten you will need to be extra careful. For instance in my house my son does not have to eat gluten free but he does at home for the most part when we have a shared meal. He is very careful to avoid cross contamination with shared foods. Like peanut butter, jam, condiments etc... if a knife goes into those products that have been in contact with gluten filled breads it will make me sick so his theory is he gets one shot to get what he wants out with a knife or a spoon 'before' he hits the bread. It works quite well with squeeze bottles of some things.. mayo, jam etc... Once you heal (months) you should be able to introduce other foods on your list of culprits one at a time to see if you can tolerate them. When the 'gut' is damaged all sorts of things can happen. I for instance had food allergies for 25 yrs that were severe (Seafood, fish, tree nuts) and was tested positive for all of them. Now after being gluten free for 6 years I was retested and food challenged and they are all gone... Our immune system is mostly in the 'gut' so if it's damaged from something else all sorts of things can show up. Give it some time, eat what works for now and give it some time. Rice and meat and low fiber veggies for now might work for you. Season your food well so that it's not bland. As I said once that works and you know your feeling better try one new veggie at a time for a few days to see how it goes. Good luck to you.. Just know that the beginning is the toughest part.. once you learn about what you can eat and what causes symptoms you will be able to adjust to it and it will become second nature. Hang in there... and welcome to the other side...
  4. You are not crazy... I myself had a host of food allergies fish, seafood, nuts of all kinds etc... for many years 24 to be exact. I was retested this fall for all of them and many more and they are now gone... Not allergic to anything. My allergist contacted my gastroenterologist and they together have concluded that the 'allergies' were triggered by undiagnosed Celiac which I was diagnosed with 5 yrs ago. I have been strictly gluten free for the last 5 yrs and now the allergies have gone away as well as the damage in my 'gut'.. Our immune system resides in the gut, so if the Celiac was destroying the gut undiagnosed for years ( I was the sick kid in the family) then it could trigger some pretty intense other autoimmune reactions that would not be recognized as 'traditional' Celiac symptoms. As I said I've always had stomach issues but not bad enough to slow me down until 7 yrs ago, then I was a mess. Stomach pain, nausea, diarrhea, fatigue, insane muscle pain and joint pain.. I've had blood tests, biopsies, and genetic testing and was finally diagnosed based on the biopsies and the genetic tests as my preliminary blood tests were negative. We know now that the original tests were negative because I was so sick I was living on cottage cheese and jello at the time and they are both gluten free so I was not consuming anything. I remember my gastro doctor saying two things to me. 1. There are only two things in this world that can make your insides look like raw meat and that's cancer and Celiac. He knew I didn't have cancer because he did that biopsy first. 2. Now that you are diagnosed you have to be strict with gluten free for the rest of your life and I bet the allergies either go away or get better.. (that was 5 yrs before the allergist!!!) Gluten free eating is not difficult at home, sometimes scary eating out and always scary eating at other peoples houses. Christmas eve my cousin was excited that she had gone out of her way to make most of the food gluten free and then proceeded to take a cracker and run it through the shrimp dip I had brought. I put a spoon in it on purpose and we discussed it about guiding the guests to take some on their plate and not dip crackers but that didn't happen so I had coffee and caramel corn (that I made and brought) that night . I laugh at this because it's a learning curve.. But I digress... My comment was supposed to be about you not being crazy about the allergies it's a real thing.. I am living proof. !!!
  5. Yeah $300 - 400 but well worth it because it tells the tale. If she has the DQ2 or DQ8 gene with the highs on the other tests. She has Celiac. You can have Celiac unless you have one of these genes. If you don't it could be gluten sensitivity which has the same symptoms but doesn't cause the damage of Celiac.
  6. Working full time plus I can answer your question. It gets better with time and the healing will make you feel better. Make sure you aren't getting gluten someplace you wouldn't expect. Most importantly you can't cheat and say 'just this once I'll have some'... Not going to work!!! Bring your own lunch and learn to cook your own food. There are a lot of gluten free products on the market now but I still prefer homemade. My office has a wonderful cafeteria but I only eat salad off the salad bar from there because I've been 'glutened' too many times by cafeteria workers that don't get it. So now I bring my lunch. If someone brings in treats don't ever eat them if they are homemade, even if they say they must be gluten free.. because cross contamination in a kitchen that isn't entirely gluten free will get you every time. If it's an event where you have advanced warning bring a treat for yourself that you know is gluten free and join the party!! I've rarely missed a day of work due to Celiac in the 5 yrs since my diagnosis but I did a lot of reading and learned what not to eat and how to find it 'hidden' in other foods. It's a learning process but you have to be totally gluten free, all the time!! Eventually, you'll heal and staying with the gluten free diet will keep you that way.
  7. I have Celiac and I must say I felt better after 3 days on the gluten free diet.. Yes the damage takes much longer to heal but the initial symptoms were better in just 3 days.. So it's not impossible. My tests all came back negative at first until they did the genetic testing and biopsies. My doctor told me that there are only two things that can make a person's insides look like raw meat Cancer and Celiac and at that time he had already done the biopsies for cancer so he knew it wasn't that and was convinced it was Celiac. The second biopsies and genetic testing proved him right so I have been gluten free since that day (5 yrs now) and never felt better.
  8. I've been eating them with no issues however, I wanted to bring to your attention some 'conversations' that have been happening in the Celiac world that they may not be consistently gluten free. General Mills developed a process to take regular oats (not certified gluten free from the farm) and remove the traces of gluten in it to make their product. Some are saying that one box could be gluten free within the 20 ppm limits and another may not as their testing loads boxes together and takes a mean sample. I don't know how true this is and General Mills is addressing those concerns as well.. Just want to let you know that in case you have issues. I don't as I said, I've been eating them a few weeks now with nothing so I'm not sure I believe the hype of the concerns being voiced. I love Cheerios!!
  9. I used to feed my cats that all the time. My male now has diabetes and my female had bladder infections regularly while on it. Be careful with that stuff!!!
  10. My favorite restaurant in Chicago is Quartino.. they are an italian restaurant but have an extensive gluten free menu. Google it for location and menu
  11. Just my opinion but if the child has the genes AND has gluten intolerance already that is Celiac.
  12. Outback I would trust.. other's not sure. Mexican food is good when you are in a strange place. ALWAYS tell the waitstaff that you have Celiac. I know don't want to broadcast but it will help believe me. Recently, I've been asked is it a choice or an allergy when asking for gluten free.. I'm always upfront and blunt. Celiac disease, allergy if you must classify it that way, extremely sick if you don't . please be careful!! Haven't had a problem with my nice but blunt response. One local restaurant cook even don's gloves to make my breakfast on Saturday mornings It's doable - I've been at this 5 yrs and at first it seems daunting but it will get easier.. On your trip good luck. Some of the places I have eaten at when traveling Outback, Longhorn Steakhouse, Olive Garden, local or chain Mexican (think corn tortillas) , Indian food (just skip the bread), and if at a diner type it's a crapshoot so be careful there. Oh and last but not least Red Robin!!!
  13. Hang in there, it takes a long time to heal from the damage of Celiac either initially or a glutening. Sometimes there isn't an answer to why something pops up again. Just be vigilante with the diet and keep smiling I know it's tough I'm almost 5 yrs into this and I still have a day here and there where I wonder what the heck is going on... Not often anymore but still there. Foods in their natural state is the best bet until you figure it all out. Some have a sensitivity to corn so maybe lay off the popcorn for a while and try to reintroduce it later... again hang in there
  14. I take Omeprezole (prilosec) and I get the generic and have no problems. I've bought them from various stores Costco, Walmart, Target etc... and never had a problem
  15. I do plan to try them ALL eventually lol