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About heymom45

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  1. About 2 months ago, I asked these same kind of questions (concerning all the varied reactions) to my kids' pediatric gi dr. We were referred to him because I have diagnosed celiac disease and so does their eldest sister. I've read some of the posts detailing very severe reactions and could only pray for so many of you, because despite my having been diagnosed over 40 years ago I have had almost no symptoms compared to others! The doctor's explanation was that if you have celiac disease, you must follow gluten free diet because even when small amounts are consumed your body IS adversely affected. You may not have dramatic physical suffering, but internally your body is ill. And like when someone is ill without know it, how you feel becomes "normal" (even though you are not at your prime). When you have the flu, by the time you KNOW you are sick, you have really been sick for a while. This was not a big enlightenment for me, but it gave me a little more to understand. And like has been said here, there is still much to research and discover!
  2. heymom45

    How R Schools Helping Kids W/celiac?

    Thanks for the info Stephanie & Mommy!! The kids are pretty receptive to the changes at home. They've had so many of the gluten free foods, that it's not foreign to them. Now there'll be less distinction of what is 'MOMMY'S'. Even though I've been watching for signs of celiac disease in all of my kids for years, it's a little rattling to actually get the positive diagnosis the first time. After all, they're my babies and now they have a disease!! I've seen 504 mentioned in other reading. That sounds kind of "official", so I'll look more into it while we await the results. In the meantime, I'll seek verbal cooperation from staff and teachers and see how we do! Even at home, we haven't tossed ALL the gluten. It sits in a cardboard box, outside of the kitchen. We prepare meals and snacks from food in the kitchen and pantry, cardboard box is last resort. The kids intake of gluten has been reduced dramatically with no ill attitudes!! I know zero gluten is the only cure, but this seems best way to work kids AND HUSBAND into the changes!!
  3. I have 2 children about to be tested for celiac disease. My dx was in 1983. Winter weather is delaying the testing, but dr gave ok to start gluten-free diet as one is showing typical symptoms & one of my other children was diagnosed at age 21 (3 other adult children, never tested). As long as tests are run soon (next week) he says this won't affect results/conclusions of upcoming labs and tests. The testing for celiac disease has changed dramatically since 1983. But managing it is still the same. But managing CHILDREN with celiac disease is new to me. They are only 6 and 8 yrs old. I'm prepared and knowledgeable of gluten-free homes/kitchens. The kitchen is gluten free and we're implementing rules for those (husband & daughter) who still consume gluten. I'm not sure how to manage this when they are away from home, though. My biggest concern is at school. How can cc be managed in a school lunchroom (crumbs on tables, little kids eating habits)?? Kids with peanut allergies are seated at their own table. Is this plausible for celiac disease? What if there are no other kids at his school? Similarly, when parties are held in classrooms and desks are arranged touching each other (groups on 4)... do I ask the teacher to rearrange her classroom?? Will I have to make waves to get the help my kids will need? (I'm uncomfortable making waves :s) Will they understand the how important 100% gluten-free is, since symptoms are not like an outward allergic reaction?? ANY advice would be appreciated!! (I will begin by pulling myself together and giving a listen to you all!!)
  4. heymom45

    How To Begin W/kids?

    I have been with celiac most of my life (medically diagnosed in 1984). We have had 6 children. Through the years I have often mentioned the history, but since kids have not shown signs, doctors weren't concerned. My eldest child was diagnosed in her 20's. My youngest children are 6 and 8 years old and we now have a family dr attuned to my concerns!! My 6 yr old has been having constipation fairly regularly (no pun intended!) for a couple of months. Sometimes this is interfering with getting to the school bus on time! The 8 yr old does not seem to have tummy issues. About a yr and a half ago, another dr diagnosed him with ADD (non-hyper). That dr was also very pushy about rx meds for ADD. I never felt my concerns about anxiety or sleep disorders (he's had trouble falling asleep since he was 18 mos old!!) or celiac disease had been given proper medical attention. The last time I told him I was having trouble wrapping my head around the explanation of why anxiety and sleep disorders were not ruled out he answer: YOU ARE NOT UNDERSTANDING IT BECAUSE YOU DON'T WANT TO. IF YOU WOULD JUST PUT HIM ON THE MEDICATION, IT WOULD SOLVE ALL THOSE PROBLEMS. I was so in shock, I could not find words. My husband and I nodded our way through the rest of the conversation, then left the office, NEVER to return! Anyway, through all of that, I did some homework on celiac disease (something I haven't done all these years!). As I'm understanding it, some of my child's issues could be symptoms of celiac disease. Like being disorganized, inattentive, requiring much redirection from teacher and tantrum behaviors at home. Even lately, I've noticed that when he gets a really good night of sleep, he's waking up with puffy raccoon eyes, that linger all day long!! He's 4' 2" & weighs about 50 lbs. I'm wondering if some of the behavior issues are from being tired?? We have had him in therapy for a few months and the therapist is not convinced of the ADD either. He does not display behaviors (symptoms) consistently. At times, he has gone many weeks improving organization, attentions and self-control, only to return again. The family dr we are now seeing has agreed to test him as well, but said yesterday that he doesn't think he's as likely a candidate for celiac as his brother because of the absence of stomach issues. I did mention that I've learned of people with celiac disease that lack stomach issues. He seems like a good dr and was not hesitant in having either of the boys tested. He even seemed to suggest he was going to take some time to learn more about some of the things I was saying!! (I think I like this one! ) I have no knowledge of these tests that many of you seem to be familiar with. When I was diagnosed, I was a kid, and my parents gave me "need to know info" only. Additionally, many of these tests done nowadays had not yet been developed. I was given every test to rule stuff out, the last was some kind of biopsy. THAT resulted in my diagnosis. My kids' dr has ordered a cbc cmp free t4 tsh celiac disease panel for each of them. Following the tests, they have been referred to a peds gastroenterologist in Rockford, IL. (about an hour away!) Since my only experience with celiac is my own, I'd like to have some input from parents who have been here. I've started introducing my husband to the notion that things will have to change in a major way at home, and school, if either of the boys is diagnosed. They won't have to go it alone like I have for so long!
  5. I agree with GFinDC about the possibility of diabetes. For me, if too many things start to feel out of synch with my body, I have resigned myself to a thorough check up. I'll consent to blood work and labs,scans... Talk openly about all my concerns. I've found that if I tell dr what my ailments are, as opposed to what I think the diagnosis is, the dr & I have been able to work together more effectively. In this way too, I have also dismissed a few drs because they weren't good "team" players. When it comes to my healthcare, I am not looking for someone to tell me what to do. I want them to help me better understand my body so that I can take care of it the way it needs to be (like a coach takes care of a team). After all, it's MY body, not theirs!! This may also lessen the time it takes to make a good diagnosis. Lastly, even with the best of drs, I will go home and research what I've learned.(it deepens the understanding as well!).... and then pray that God keeps you in good hands! ....and then trust Him!
  6. ...maybe double they whiskey in case of extreme cold!!! LOL!!
  7. HI Grey66!! Welcome to the celiac world!! It's kind of like going to a haunted house for the first time, huh?? Just take a deep breath... It IS a bit overwhelming when you realize that gluten is EVERYWHERE. I am almost 45 years old and have lived with celiac since I was 13. I have 6 kids (6-26), 3 of them are still at home. I am the only one diagnosed w/celiac in my home. I will be having my 6 & 8 year old tested soon & my 18 yr old is planning to get herself tested too. Of my 3 other adult kids, only 1 has officially been diagnosed, but despite the consequences she's NOT going gluten free! I've seen other posts here urging you to have your kids tested and that great advice. From other posts I have read on this site, I may have dodged quite a few other health crises by having been diagnosed younger!! (my mom may be far from perfect, but she gets a lot of the credit for that one!! . STEP ONE IS GETTING THE GLUTEN OUT OF THE KITCHEN: A couple of years ago, I (being the lone one w/celiac) got sick of the sight of all the gluten in my home. So one day I went through EVERY food item label and if it contained gluten it went into a cardboard box!! (not to be tossed or given away because my husband would have lead the mutiny! lol) This became a teaching moment for my family!! Since they did not understand "celiac disease" or "gluten free diets" (their whole life, they just knew mommy didn't eat certain things), I had stumbled upon a way to show them that being on a gluten free diet was not so strange as it sounded!! When I was done the gluten-free food was all that was left in the kitchen, and the gluten food was in the cardboard box. Now it did not seem so overwhelming to go gluten free!! I/we/they only needed to replace-not "give up"- the items in the box. EVERYTHING ELSE that was left in the kitchen was TOTALLY OK TO EAT. After that, my husband understood my diet a little better and "going gluten free" didn't sound like I had to take away all their food!! The gluten box remains separated from the kitchen. That said it is imperative that your husband consumes NO GLUTEN. The first 18 months are crucial, and full of ups and downs. But one day, one meal, one snack at a time you will find your way. I'm new to this online support, but even given my life with celiac there have been things I've learned! The newbie 101 is a great place to start here. I live in IL and a couple of years ago HY-VEE opened a store nearby. Out this way, they are the greatest chain store or gluten free shopping!! Others here on this site have made great suggestions too. I love Mexican food (and my hubby is Mexican) and I have found that it goes well with the celiac eating style (doesn't that sound so much better than "celiac diet"? lol) Welcome and feel free to pm me anytime. In all my years with celiac, this is the first time I've sought support and I'm glad I finally did! Others with celiac are the only ones who truly understand ALL that it entails, and it makes the load lighter when we can share it. Message me anytime if you'd like to talk more!
  8. hey Diana.. it sounds like you are trying really hard to get a handle on all of this "health" stuff. It's not easy! And when friends/loved ones struggle we can feel helpless and overwhelmed for them. Sorry to hear about your friend with MS. A few years ago, I went to dr because of pain in my feet. When my feet get cold, or are inactive for a bit (20 mins or more), there is a cringing pain in my feet when I do get up to walk. Metaphorically speaking, it feels like my feet are made of glass and the toes and balls of my feet just shattered. After a few careful "soft" steps, the pain is gone. Since there was nothing wrong with my feet otherwise, he did blood tests. Turns out I'm B12 deficient!! He suggested shots.... no way, I can't handle them!! They're really the only thing I am a baby about~bad childhood experiences I guess. Anyway, it turns out that nerve damage/issues and vision problems can be related to B12 deficiency. Now if I could only remember to take my vitamins everyday!! :s I recently got really honest with a new primary dr. I told her that I have only had a few major health issues (unfortunately, when I do have them, they tend to be serious and without too much warning!!). I also told her I'm not a big fan of check-ups & preventive tests, but that I do listen well to my body!! .... one of my concerns was how celiac could impact my overall health given my age and health history (6 kids, blood clots, brainstem bleed, celiac..) or if celiac typically leads to other health issues related to age. Sigh of relief!! Celiac does not really lead to much of anything else (dr words turned into simple words!! lol). And to be sure she gave referral to GI dr. He said celiac does not increase health risks as long as I follow the diet. The only thing we are at higher risk for is lymphoma, but he said it still is a very slight risk. She also gave me referral to neurologist (because the brainstem bleed needs periodic monitoring w/MRI), who also said celiac is not directly related to brain issues. It's not likely she would have referred me to neuro if I had not had this other neuro issue. Of course, these answers were given under the assumption I was following a gluten-free diet.So be encourage, and eat right!! (and take your vitamins!!)
  9. LOL!! I will have as much challenge converting your metric weights in the recipe as you will with the temps!!
  10. mbrooks~ some days our faith is all we have to keep us going. so do what u can to hang on to it!!
  11. MGR~ this sounds delicious!! I love dark chocolate. As soon as my motivation returns, I will be exploring new gluten-free recipes. I am in IL, USA and we are in a deep freeze at -30 F. I treated kids to gluten-free peanut butter cookies when they returned from school today! mmmmmmmm...
  12. surviormom~ I'm catholic & strong in my faith. I wish, for me, that I could settle on a decision about this that satisfied BOTH my head AND my heart. I've heard this discussed briefly on catholic radio. It is acceptable to take of the cup, without the host. You are still receiving full communion. But some w/celiac would add that the cup could be contaminated by the priest (as he handles the host) or by communicants receiving both. But MY heart wrestles with the faith side of this: In receiving the bread and the wine, we accept (believe) this is NOT bread and wine, but the actual body and blood of Christ (according to the catechism). If in receiving, we TRULY believe this..... then what's gluten got to do with anything?? I've wrestled with this same question when the churches put hand sanitizer on the altar, too. My faith tells me that the body of Christ would not pass sickness on to another. After all, he healed lepers... he didn't spread the disease! I guess we should pray..... (and maybe invite Father over for coffee & discussion?)
  13. 1desperateladysaved~ I'm happy for you that you are feeling much better!! I went to dr for first time in yrs last month. After the life/death crises I thought it might be good to know exactly where I am healthwise!! I went to a GI dr to see if what I knew of celiac might be outdated. When he took my health history, he asked how I knew I have celiac. It turns out a lot of people self-diagnose this one!! I told him my story & he was wowed. LOL. He told me there are not many people my age that were diagnosed so young. I still laugh when I think about that conversation!! It turns out that, other than the testing methods now available, there's nothing new to tell about celiac disease!! (phew... no more homework!! lol) He would like to do some sort of test to see how my intestines are, but there would be no previous results to compare (for baseline).... Unless I go OFF the gluten free diet for a month or so, then do the test (to get a better baseline). I looked at him and said "THAT'S not happening!". I've consumed gluten (intentionally) here and there with no BIG effects. But for the first time in MANY years I consumed gluten (like KFC chicken, gravy, creamed soups, box cereals) for 2-3 day stretches over a couple weeks... NEVER AGAIN. My gut suffered for days. I understand I've reached the half-life of all that, but it just was NOT worth it. I've never needed support either.... until now. I guess with the kids growing up I finally have myself to think about. Funny how hard that is....
  14. I was 13 years old, a sophomore in hs, still waiting for "my growth spurt" (& my first period!). I weighed 68 lbs! After weeks of "iron fortification" in the form of chewable rx tablets & raw eggs beaten into glasses of milk, my iron levels didn't come up so I was admitted to the hospital & tested, & tested, & tested. Finally, the results came back "non-tropical celiac sprue disease". At 13, you are the center of the universe, right?? So for a little while, maybe it was kind of cool. I even wrote a paper, "WHAT IS CELIAC SPRUE DISEASE?" ...how could the teacher dispute my research on what was (at that time) considered a "rare disease"?? (pretty smart, huh??) But that wore off pretty quick considering the long list of foods I was NOT to eat!! And that has pretty much how I have lived since... "NOT" eating gluten. I've gone to prom, graduated, married (once, 26 years so far!!) and had 6 children (4th is about to graduate high school, leaving 6 & 8 year old boys in the nest!). I've operated a daycare business & driven a school bus or two along the way. When it came to eating, I just ate whatever "gluten-free" was available, or I would eat something "later". I worried the kids could have celiac. But drs always said no symptoms, no worries. So far, none of my kids were diagnosed until they were adults. My eldest daughter was diagnosed at an ER, around age 23, when complaining of abdominal pain & mentioning that Mom had celiac. Child #2, at age 19, was suffering migraines & panic attacks. She's 21 now, & still no celiac. Child#4, now 18 years old, has complained of non-specific stomach pain/cramps. No dr ever considered celiac because she was otherwise healthy. A few months ago, she decided to go gluten-free. After only 3-4 days she felt remarkably better!! She talked w/her new dr about celiac history. Now she has to go back to eating gluten so they can do the test!! Life at 18 is busy, so she's not following up on the test right now. Lastly, child #5 has had sleep/anxiety issues since 18months. He was diagnosed with ADD, but his therapist & I don't agree. I'm not pushing the celiac idea until next week when we meet with new pediatrician. His old one kept meeting my concerns about his health with "If you would just give him the ADD meds it would solve all those problems." As you see, my life has been full!! amen. But in 2007 I had a blood clot in my leg & lungs, following the emergency C-section of child #6. And in 2012 drs found a hemorrhage in my brainstem (another "rare disorder"!!! lol) My health is once again good, but I think I need to make it more important. Now that the blood clots are history & the bleeding is all gone away, I'm left with celiac. Ugh! It's messes with meal plans, social events... it even messes with church!! (I'm a catholic!) It may sound crazy, but after all these years I need help with this!! sometimes I just want a stack of Oreos and a cold glass of milk, or 3 bowls of Cheerios... I've earned it, haven't I?? :s