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mamaloca2

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About mamaloca2

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  1. I am in the same boat as you are. I know that my two kids and I have it, but none of us have an official diagnosis. My daughter was tested at 18 months old but it came back neg. I had started her on the diet while waiting for test results and she improved so much, I said screw the results-they were not accurate! I had a really hard time convincing my Mom for a year. Be persistant and be confident. It's not till I finally got really angry that I said to myself " I am their mother and I know them better than anyone. I've seen what gluten does to them and I will NOT back down to people who don't know anything about this."

    Even if you had run a celiac panel, they are not as accurate as the doctors like to believe. Just read other testimonials on this site. Many do not have an official diagnosis, but the hell they have been through is proof enough. Trust yourself and don't back down to others. You're an awesome Mom! Best of luck to you.

    Stacy


  2. Did his docs put him on a stool softener of any kind? My daughters gastro specialist put her on Miralax (it's over the counter.) It has no flavor and helped tremendously. We had to use it every day for a few months so that her bowel could get back to normal. You really need to keep his stool very soft for a long time since it sounds like his have been traumatized.

    I also want you to know that she tested neg. for Celiac disease but I tried gluten-free anyway. In a week she greatly improved, and within a month, she was completely normal again. Now whenever she gets gluten, she is constipated and very emotional for a few weeks.

    Hope you find the problem soon.

    Stacy


  3. That is Kara's favorite syrup. She's still going through being "depressed" about not gettng to eat Wendy's french fries, etc...now I have to tell her she can't have her "good ole syrup" on her waffles anymore. Any suggestions on other gluten-free syrups that are similar? She hates the "real" stuff.

    Hope everyone had a great Christmas! I'm hoping things calm down now.

    Mary

    This was the problem with my kids too. They now it it w/out complaint. The trick: I mixed it with sugar syrup, putting just a little of the real stuff into the sugary stuff. Gradually I dilluted it more and more, until they were eating pure maple syrup-and loving it! I used to hate the stuff, but it worked on me too. We buy the Costo pure maple syrup and it is very good.

    good luck!


  4. I started work in a dental office in August, and was feeling pretty good after being gluten free for5 months. However, about two weeks into the job, I started having increasingly bad brain fog and problems with my eyes. Sometimes my whole upper jaw will just ache, even though I have no cold or tooth problems. I use the powder free gloves but the dentists uses powdered. Does anyone know if the powder in the air could be causing my problems? I feel like I am being paranoid and am afraid everyone else will think I'm insane if I ask him to use non-powdered. By the way, non-powdered are still slightly powdered-are they not? If anyone has information on this, it would be greatly appreciated. If there is gluten in gloves that is making me sick, I need something I can show the doctor-and I where the heck would you find gluten free gloves??

    Thanks everyone,

    Stacy


  5. My husband has not been diagnosed w/ celiac, but has it in the family and both our kids have it. He recently developed a rash on his forehead on both sides, and on both sides of his nose. There is a little on his chest. The rash is red and if he doesn't exfoliate and moisturize it is very dry and flakey. It is very noticeable and not going away. My question is, even though the rash is not charactoristic of DH, could it still be from Celiac Disease?


  6. I'm having one of those days...sitting in front of the t.v., eating my gluten-free cheese puffs, getting pelted with Krispy Kreme commercials... My husband says "Wow, a donut sure looks good right now!" I, of course reply, "How would you feel if you knew you could never have a Krispy Kreme again???" I just need a little support.

    I just had krispy kreme moment this weekend too. Doughnuts are my FAVORITE junk food so it is the hardest to deal with. When I have one of these moments, I indulge myself in my favorite gluten free dessert. I helps make the longing go away!

    Feeling your pain,

    Stacy


  7. My daughter brought home a list of ingredients that she will need for tomorrow's lesson. They are making something with salt & flour dough. Her ingredient was salt-right! I'll have to send everything so she can make a safe batch, but what kind of flour is best for this project?

    It calls for 16-oz salt, 1-lb flour and water. I'll happily send everything she needs, but I want to be sure it works the way the teacher is expecting.

    TIA!

    If what they are making is playdough, then Quinoa flour is a great substitute. It's what I use. I would see if the teacher would use that instead for the whole class, so you don't have to worry about airborn flour or cross contamination.


  8. Your daughter may be too young for enough damage to have occurred to trip the test. It took me 20 years and a lot of damage before it was figured out and that should never happen! To be honest, any one with these symptoms, especially the smelly, fatty stools, most likely have celiac disease.

    I know many people, especially with small children, like to see an official diagnosis on a piece of paper but this being an autoimmune disease, it doesn't always work that way.

    I would suggest the diet, most definitely. You could biopsy the rash to see if it is DH, but it sounds like it and you have to ask whether you want a child to have a biopsy. I don't think the test is bad at all but I have no experience with DH myself.

    If you do a test trial with the diet, it has to be for at least a couple of months and you must make sure your daughter gets no gluten....at all. It's the only way you'll know for sure. I will add that my sister's grown daughter had many of these symptoms as a child. Stomach aches galore. She is now 21 and has many serious health problems because she is not doing what she should with her diet. She doesn't have a diagnosis and doesn't want one, even with a diagnosed aunt (me) and 2 other autoimmune diseases associated with celiac disease. I never thought my family would be so stupid!

    Good luck!

    Your daughter sounds just like mine. She was neg for celiac. Have her tested through enterolab. Both my kids tested positive for gluten sensitivity and the diet has done wonders for them. https://www.enterolab.com/Home.htm


  9. My daughter had a blood test last week and we are still waiting on the celiac portion of it. Hopefully, today or tomorrow those results will be in.

    I did a 3-day stool collection and we did get those results this morning--NORMAL.

    It is not that I WANT her to have Celiac Disease. But I just want an answer. In a strange way, I did feel some sense of relief when the gastro told me that she strongly suspected celiac--because it is an explanation and there is a SOLUTION.

    My big fear is that we will never get an answer as to WHY she has so many GI issues. :(

    The dr. said if the celiac tests all come back negative, we will move on to an u/s and possibly an intestinal biopsy, etc.

    I just want some sort of answer.

    How accurate is the stool testing? Anyone ever had a stool test come back negative, but blood test come back positive?

    What are they testing the stool for? My daughter had three day stool sample, but it was to check for bacteria and white blood cells, not celiac. It came back normal except for some bacterial overgrowth. She also had a celiac panel drawn. It took over three weeks for the test results to come back. She had such terrible constipation, I couldn't wait that long. I started her on gluten-free diet and she improved w/in a week. When the results came out she was Negative for celiac. I was very confused. I took her off the diet to see if it had been a fluke, but instant constipation again. I heard celiac panels are not very accurate, especially when it comes to children. Eventually I had her tested though enterolab https://www.enterolab.com/Home.htm and found she was gluten intolerant. Also, you may want to look into the gluten-free/casin-free diet if eliminating gluten alone does not help. Hope this helps. Good luck!

    Stacy


  10. Yes, my friend's son and many of her friend's children had those symptoms only. Some were even diagnosed with autism and made a complete turn around after going gluten and dairy free (casein free). There is a gluten and casein free website that I could direct them towards. Also, my child has primarily neurological symptoms -- seizures, mood swings, depression, hyperactivity -- all of which go away once gluten free (no seizures at all). Celiacs can also have only neurological symptoms. I don't have many suggestions regarding your other questions. The connection is so weird to most people that they think you are crazy mentioning it.

    Thank you for your imput. I think I have seen a website like that. I will check it out again and give them the site.

    Much Appreciation,

    Stacy


  11. Has your nephew received any services for his delays?

    Yes, he has physical therapy sessions 3 times a week. I don't know what program it is. We live in California. Thank you for sharing your experience with me. I am desperate to find out if this is what is holding him back. It is a difficult disease, but if it we know that he had celiac, at least we could do something about it.

    Much Appreciation,

    Stacy


  12. Hi everyone. I have many questions so please bear with me. My Nephew is almost 3 yrs old now and still cannot feed himself, walk, or talk. He seems to understand what goes on around him and understands things we say to him. He finds ways to communicate some of his needs, however, it seems that his body just is not able to do what he wants it to do. He sometimes cannot focus on things and has staring spells that are suspected to be optic seizures. They have been to all sorts of specialists and have had many tests, but no celiac tests. They have celiac disease in their family-his great aunt (this is my husbands side) and my kids are both gluten intolerant through enterolab They tried gluten free diet after I gave them info, but only for a couple weeks and weren't even strict about it. What were your kids symptoms? How do I convince his parents to get him tested when their doctors don't even know anything about it? And is celiac panel accurate? It was neg for my 2 year old, but she was positive enterolab. Enterolab does not seem to have much street cred though. How was yours diagnosed? Is there a celiac specialist we could send a tape to? What did you do? Sorry so lengthy, but any help would be appreciated.

    Thank you

    SJ


  13. I haven't found 100% relief of my bloating on the gluten free diet, but have seen improvements when NOTHING else has produced improvements.

    Can gluten really cause trouble for up to 2 years after ingestion???? Could someone explain that to me? I'm very interested to know more.

    Well, I am still recovering after 5 months gluten-free. I try to be vigilant about my vitamins and eat well, and it seems to help.

    Also, you may want to consider that you may have other food intolerances like lactose intolerance that can also cause bloating.

    Good luck!

    Stacy


  14. My daughter was diagnosed 6 months after my son was born. She was a BIG baby and always healthy until that point (4 years old and highly symptomatic). My son was smaller, pretty healthy but always in the 10-15% for his age. No apparent GI problems and we were told by our ped's GI (who we do like) to feed him a reglar diet including gluten until he is 2 (next month) and then test him. The only issue we've ever had with him is significant eczema. It has covered his arms and legs pretty much since birth-tried different detergents, soaps, lotions, etc.. Winter months are worse, but as long as I cover him with Aquaphor before bed, I can keep it under control. Also, he is very prone to diaper rashes--the bad ones that look like I set him bare-butt on a stove top. His pediatrician does not feel that these are celiac symptoms and wants to wait until the 2 year point (especially since he is consistantly growing). I do trust him, he was VERY quick to test and diagnose our daughter, but..... Just wondering if there was anyone else out there with these symptoms, yes celiac/no celiac. Husband and I both test negative as do multiple other family members.

    Thanks,

    -Rachelle

    I would get him tested, but don't bother with the blood test. It is said to be very innaccurate in children or anyone who is not in a very progressed stage of Celiac. Try Enterolab. Or bare minimum, try the diet. That was mine and my daughter's best indicator.


  15. I am so sorry to hear about everything you are going through. Why won't the doc run tests on the rest of you regardless of results? Does it have to do with the insurance? In my case, I told the doc my concerns and she sent us to a lab, even though she thought I was just a hypochondriac, but I had to pay for it in cash ($250) because insurance needed proof of the need for the test. Mine concerns apparently weren't enough. If you have to, I would find another doc. Or like Ursa Major said, just make the whole house gluten free. You will likely find out best that way anyhow. As for your husband and family, you might have to make up a list of ingredients that are code for gluten that they keep with them. I take pre-made meals and snacks to my in-laws whenever I leave my daughter with them. They also have a list of everyday items that she can have (like nestle choc. chips, prego traditional spaghetti sauce, ect...) It's a real pain in the butt for you to have to do all this, but may save some suffering in the long run. Good luck and stay strong!


  16. By the way, does anyone have any web sites/links suggestions that is soley about gluten "intolerance" and how that affects the body? I know the "treatment" is the same for GI and Celiacs, but gluten does affect the body differently in each case. I know symptoms can be the same, but the damage in the body is apparently different. I don't think a person who is only gluten intolerant has flatten villi. I would like to know what does happen in the body then. Seems like I read somewhere that there can be damage to internal organs etc. <_<

    I am still learning as well, but pretty sure Daughter and I are gluten intolerant. I have many of the same symptoms of celiac and this forum has helped me so much. I don't know much about the differences yet. I am very skeptical of doctors now, but my naturalpath is very good and seems to know the most. he told me that gluten intolerance causes intestines to become inflamed and leads to basically all the same problems as celiac because inflamed intestines cannot absorb nutrients effectively. But I think there is still a big debate about the difference between the two. But I've noticed that my symptoms clear up faster after gluttening than most people with celiac say theirs does. It would make sense if my doc is right. Good luck with the research.


  17. recently and was told by my doctors receptionist that they were all 'fine'. I asked for the actual results to be faxed to me. My TSH level = 2.96. the reference ranges seem to be different depending where you look.

    Yes, this happened to me also. One told me I was in the "Normal range", another doctor told me I was high. I really don't like doctors after all the crap I've been through.