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Everything posted by Washingtonmama

  1. Geeze I almost forgot about the outside grill, duh. Thanks for the reminder. Ennis, good idea with the butcher paper, its cheap and easy cleanup. ?
  2. We are staying in a cabin for a week. It is fully stocked with food, spices, kitchen supplies, everything you might have in your own kitchen at home. It is only used maybe three months out of the year. I am bringing my own kitchen stuff (skillets, serving spoons, bowls etc) and of course our own food. I am wondering what else I need to do to avoid cross contamination beside not using their toaster or oven. I don't want to be sick on the only vacation we get a year. What are your best tips?
  3. Awesome you found your triggers! My niece is on the diet you mentioned. Keyto I think. I fibd the pain follows before or after abdominal rumbling and moved down as the day passed. It def hurts way down low on the left when a bm is coming. If it keeps up Ill have my doc refer me to a GI. Thanks for your input. ?
  4. I forgot to ask if you have the off and on stabbing pains with your UC.
  5. Celiac wasn't enough, your body had to throw in UC. Ugg. I will keep a good diary starting now. I never had this problem before, which is why I'm wondering if the constant expose to the cooking oil where I work is the problem. I did end up with the other symptom of being glutened, the worst migraine I've had in years.
  6. I know that feeling, racking your brain trying to figure out what you are. It can be maddening! Even worse for you that your symptoms vary. Very frustrating.
  7. I got up today feeling horrible. Super tired, no energy at all, cold, weak. Took my hubby to his appointment. I had to go to the bathroom, a normal b.m., but with blood. An hour later I got off and on stabbing pains below my ribs to my belly button. No pattern to them at all. My upper abdominal area seems very noisy, and that's usually when the pain happens. CT scan was normal. Usually when I get glutened I get a nasty migraine and diaharreah, no stabbing pains. And I have no diaharreah now. I've never had this happen. Could this be gluten? Have any if you had these issues? I did start a part time job at a little store/RV park a month ago. We fry foods there, but I'm very careful not to touch my face and change clothes as soon as I walk in the door. I glutened myself a few times when I first started, but not in the past few weeks. I've been off work for 3 days so I can't see how I've been glutened. Could it be the exposure at my job? I hope not, I love working there!
  8. We have gone gluten free, our whole house, as of a month ago. It was pretty seamless since I had been gluten-free for 5 months last year. I have found many good recipes, and my picky husband and one of my boys who is also a picky eater, even prefer many gluten-free recipes to the regular ones. My husband did see my point about the size of the gluten protein means nothing. Its a gluten protein period, that's what you are avoiding. It doesn't matter if its hiding in the scratch of your baking sheet and you can't see it. You can't see the wind, but it's still there. I hear you on the anemia. I've been anemic for several years, I just thought it as because I was getting a little older. Has your anemia gone away or do you still have problems with it?
  9. Ennis, it is made out of metal, coated with plastic I think. You have such a hard time, my heart really hurts for you. But you are such a support to those on this board, and a great teacher for those of us who are new.
  10. Thanks everyone! I think its hard for people to fully accept because they cant see the damage it does every time you get glutened. It's invisible. Im glad to know I wasnt being paranoid. I sure was when I was first diagnosed. I laugh at myself now, but its a pretty steep learning curve.
  11. I was diagnosed about a month ago. I have mild symptoms...itchy spots and diarrhea a few times, when I eat gluten. I don't seem to be very sensitive when I have eaten gluten. My daughter with Celiac has more severe symptoms. My 11-year-old with Celiac has no symptoms. My husband thinks I have gone overboard buying new pans, replacing wooden and plastic cooking utensils, etc. Last night I was trying to decide whether or not to use the mixing paddle on my Kitchen Aide. It is scratched pretty badly in some spots. I explained, again, about the gluten protein and he says a minuscule amount won't hurt. I told him your body can't distinguish the SIZE of the gluten protein, it reacts to a lot of the gluten protein or a little. If I am wrong, I will admit it and change how I am doing things. I used the paddle, ate some yummy gluten-free cookie dough, and woke up foggy headed and a mild migraine. Could be a reaction to minuscule gluten from the mixing paddle, or it could be my imagination.
  12. My daughter was recently diagnosed, and her doctor agreed, Celiac could very well be the cause for her recurrent miscarriages. She is very excited to have found the problem. Looks like you are on the way to success! Whoohoo!
  13. It sounds like you were beyond miserable. But you found the solution! or whatever reason wheat just throws your body for a loop, so avoiding it like the plague seems to be working. I know you might need for a doctor to positively diagnose you with Celiac, but maybe it just doesnt fit into a neat little box to be considered Celiac. It sounds like something 100 times worse, and maybe you will never really know exactly what it is. But you have found the solution, and Im so glad you are feeling better! Ive also heard of Lyme disease causing some of the same issues you had. Also, Ive researched the GAPS diet and know several people it has helped. Its a diet that heals leaky gut. Maybe look it up if you want.
  14. I forgot to ask, do you have family members who have RP! if so, you can usually base how fast your vision loss will progress on their vision loss. Not always, but I've heard that is the general rule. Most people don't lose their vision entirely until they are in their 60's or 70's. Just something that popped into my head.
  15. Since I was diagnosed with Celiac disease, we had our two youngest (ages 11 and 16) tested. Our 16 year old is fine, our 11 year old had a high IgA but all the other tests were normal. Except he is anemic. Honestly, my brain hurts trying to figure this all out. I never did figure my own out. His doctor, who we love, says he thinks he is at risk for one day being diagnosed, but for now seems fine. The GI docs in our area are booked for months. What do these test results mean? CELIACDP IgA 183 114.0-339.0 mg/dL Gliadin Peptide Ab IgA 17.2 Units Gliadin Peptide Ab IgG 3.8 Units Tissue Transglutaminase IgA 20.9High Units Endomysial Ab IgA Scn Negative Celiac Panel Interp Results suggest the possibility of certain gluten sensitive enteropathies such as celiac disease and dermatitis herpetiformis. Diagnosis should not be based on serologic findings alone. Results should be used in conjunction with other clinical findings and biopsy results for a diagnosis of gluten sensitive enteropathy
  16. Alex, are you serious about your depression slowly going away? If its not too personal, have you stop taking medications now? I've suffered from depression all of my life, even as a baby, according to several of my aunts and my mom. My depression is "treatment resistant", meaning medications don't work well, occasionally not at all. I added Deplin a year ago and for the first time in my life I am consistently off of the couch! Deplin replaces methyl folate, a key vitamin many with chronic depression need but are unable to metabolise. It is already metabolised so your body can get straight to using it. It really helps your depression medications to work better. There is a gene responsible for making your body unable to metabolise methyl folate. Now I'm wondering, could it be the Celiacs that keeps our bodies from being able to use methyl folate in many people with chronic depression? Thinking out loud here. I am so very happy for you that your depression has gone away!!! What a relief it must be for you, maybe a weird feeling for you after all of this time? I know you said you now have some different symptoms, I've heard that happens a lot when people cut out gluten. I so hope my depression goes away like your did!
  17. Im so sorry :'( My husband, boys, brother-in-law, father-in-law, my husband's uncle...all have RP. Eighty percent of my husbands side of the family have it. No one had Celiac disease though so I cant help with that idea. Sadly they have disproved the vitamin A treatment saying it works minimally in some people, not at all in others. I can tell you something really exciting though that I bet will help. We go to the Casey Eye Institute in Portland, OR for eye care. My husband and boys are enrolled in their research studies, basically anonamously submitting their tests for research. Anyway, their eye team told us they are now looking for a drug company who will make the medication they developed that will slow or completely stop the progress of RP. They will start their clinical trials with the medication in about a year. They have a stem cell trial in the works too, to begin in about 9 months. So don't lose hope, there is a LOT of hope to stop your RP! They are very confident in their medication and the stem cell treatment, this is good! Maybe you can contact them to see if you can get in on the trial too. I do think you have to go to Casey Eye Institute as they have satellite offices throughout the US. Heres the link...http://www.ohsu.edu/xd/health/services/casey-eye/
  18. The external pockets are a great idea. That and getting him gluten free snacks solves the whole problem. I agree with kids knowing how to take care of their own issues. He has Autism, and we are still working on having him pay attention when we are out as he tends to just mosey along, not paying attention or walk into the street. He would wander off when he was little if we didn't watch him like a hawk. So big improvement. He will remember his own snack one-day I'm sure.
  19. Everyone on this board is wonderful! Thank you so much or your help. I'm going with what you guys say, and I will share what you said with my husband. I see there are a few places I can relax in, and replace the other things, which won't be so expensive. Thank you!!!
  20. I can't see my GI for several months to ask these questions, so I thought I would ask all of you. I'm not having the endoscopy done, so I'm ok to go gluten-free right now. One friend has a brother and his children with Celiac. They are very strict, replaced all pans, plastic, wood utensils etc. My dentist and an aquatience said they just eat gluten free, at home and at restaurants, and never replaced anything. My daughters GI said replace kitchen stuff, do a thorough clean etc. I don't have money to buy new things, but we will find the money if we have to. And my trusty, wonderful Kitchen Aid, I assume I have to replace that too. We are having a gluten-free kitchen, hubby and the kids are wonderful about it, but hubby thinks I might be going overboard replacing things. Who do I listen to, I'm thoroughly confused!
  21. I have to carry around snacks for my son with low blood sugar. If there isn't a trashcan near by, I jut have him throw the wrapper back into my purse. Hence the tiny crumbs. I sometimes carry a snack bar in my purse for me too, same reason. I was just diagnosed a few days ago, and I thought we were supposed to avoid little crumbs, like if I rummaged around in my purse then ate my snack bar it would be a problem. I'm glad I don't need to be so paranoid. Its so hard to learn all of this, we new people are drowning in information! And yes, I clean out my purse, and I might need to just carry a little trash bag with me. I have a grandma purse, everything you could ever need is in there LOL And I think this is a perfect excuse to go buy a new purse hehehe
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