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texasmama

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Everything posted by texasmama

  1. Thank you all again for the support and feedback. Lauren's sleep is so very disturbed that I really believe that something else is going on with her. It is not getting any better, either - if anything, it is getting worse. Except for our 24 hours experiment back on gluten, she is absolutely gluten free. I watch everything she eats like a hawk and have convinced the church nursery to stop serving goldfish in her class and instead use Envirokidz gluten-free cereals so she won't accidentally get a goldfish someone else dropped. We don't eat out and we stick to brands which are known gluten-free and not known for cc. I really feel that we have a good idea of how she is off gluten now. Most of her symptoms are much better or gone...but the night waking and restlessness continues. She was up about 8 times last night and had a couple of time periods when she just wouldn't settle. Eosinophilic disorders are on my "radar" because my best friend's daughter has one and her main symptoms were reflux and night waking. She is now 100% on an elemental formula diet with no foods at all. Hopefully foods can be reintroduced with success later. It is a devastating disease if not treated and I don't want to miss something like that.
  2. AMQmom, Worriedtodeath and gfgypsyqueen - thank you for sharing your stories. It helps me to make a better decision for my daughter. Ursa Major - you make very good points and I appreciate your feedback. Lauren eats only incidental soy (some soybean oil and soy lecithin) but I can consider getting rid of that, as well. It also helps me make a better decision for my daughter. gfpaperdoll - Your statement struck me as snarky and was not helpful in making this decision. I am very new to the celiac world and very much feeling my way through the process. This is something I take very seriously but it is hard to make an educated decision if you have not weighed ALL alternatives, even the less desirable ones. Here is what I did: I gave Lauren gluten for 24 hours and saw a return of reflux symptoms so I will not be giving it to her again. The biopsy will show whatever it shows without her on gluten and hopefully the scope/biopsy will rule in or out other serious issues. I hope it is silent reflux or something simple to treat rather than one of the eosiniphilic disorders, which are difficult to treat and very damaging. There is something besides celiac going on with my daughter and we need to find out what it is. She and the entire family is suffering due to the tremendous lack of sleep. My own health issues are made worse by not having slept more than a few hours in a row for 2 1/2 years.
  3. My 2 1/2 year old daughter had a positive IgA and Ttg gluten panel with Enterolab and a malabsorption (fecal fat) score in the severe range. She has been gluten free for three months. Many of her issues have resolved but she still has very disturbed sleep at night, waking 2-8 times per night. She has been dairy free her entire life. She saw a pediatric GI yesterday who wants to do a scope and biopsy and a 24 hour probe to check for reflux. We are agreeing to the biopsy in order to rule out other disorders, including sllent reflux and the eosiniphilic disorders, which can cause permanent damage if not treated and are sometimes a differential diagnosis with celiac. We are not agreeing to the biopsy to confirm celiac. However, not surprisingly, the doctor asked if I would consider putting her back on gluten in order to get a definitive celiac diagnosis. Since we are doing the biopsy anyway for other reasons, I am strongly considering it. The biopsy is April 24th. Will a month on gluten be enough to show a positive biopsy after being off gluten for three months? I feel sick at my stomach at the thought of putting her back on gluten but after much thought I think it is probably the best long term decision which will give her the most information in the future. I know this is a controversial decision. I just need to know how much gluten it will take and for how long she needs it in order for the biopsy to potentially show damage. I know biopsies are still not exact. Can anyone help me?
  4. I have four kids, ages 12, 7, 5, and 2. The three youngest and I are gluten free so our home is gluten-free. I am struggling, too, with keeping up with the cooking. Everything is made from scratch pretty much. I cook in bulk (homemade chicken nuggets with gluten-free flour) and we eat them for several days. Boiled eggs, nuts, fruits and cooked veggies can make me and the kids a nice dinner. Rice pasta with bottled gluten-free sauce is fast and easy and nutritious. I also wash and chop lettuce and then make fast salads for lunch with boiled eggs, nuts and dried fruits as well as chopped veggies on them. Very filling. I do use mixes for bread (pamelas is our fave) and baked goods like cookies, cakes and pizza dough (gluten free pantry mixes are great), which saves time. I make two pizzas and freeze one. When I am tired, I make scrambled eggs and waffles (Vanns makes a good gluten-free one) when I am tired and serve with a side of fruit. We eat healthy, mostly organic and I am very, very busy. There was an initial learning curve for me and we have not been at this very long, but I feel as if I am just starting to get the hang of it.
  5. I second testing for B12. You can be in the low normal range and still have some nasty symptoms. It happened to me. I am on B12 weekly self injections and it helps so much.
  6. We did the enterolab testing - see my siggie for results. We also have had good results on the gluten-free diet. The most marked improvements have been with my 28month old. I needed the concrete information provided by enterolab in order to wrap my brain around this and take us all gluten-free. I'm glad I got the testing and I'm glad we are gluten-free.
  7. He was already off of dairy and I took him off soy, corn and eggs on Saturday. I am treating the rash with his prescription ointment and it is looking much better. Once we clear it, I will trial one food at a time by reintroducing them. My experience has been that the eczema shows up within 24 hours or so of an exposure. I figured this out with dairy some time ago. It is very hard to tell himi he can't have certain foods. We attended two child bday parties this weekend and at one party, the only thing he could eat or drink was fruits and veggies from a tray. Even all the drinks had corn syrup. He was okay with it, but it made me sad. I brought food to the other party and he seemed okay with that. Everyone else ate pizza and cake and my three kids ate turkey, scones, Kettle chips and gluten-free, egg free, corn free cupcakes I made at home. Ughhh, my heart hurts for them sometimes. All the other kids want to know why they are eating this way and why they can't have pizza and cake. We are new to this so we are still all getting used to giving responses to these questions. I don't care so much for myself that I have to give up pizza and cake but my heart hurts for them. And I feel like a freak at these parties where I'm sure other people are thinking I am some sort of nut for not letting my kids have "a little cake". Sorry, just processing my feelings at this point.....
  8. I have been udsing a prescription ointment on the rash and it is looking better. The issue is finding the trigger so we can avoid it coming back. I will work on healing it up while doing the dietary chanmges. Thank you for all the advice and help.
  9. Thanks for the feedback. I will look into soaps at school. I have decided to remove eggs, corn and soy and see what happens. He is in agreement, as he wants to resolve the rash. We will only eat the plain Stax chips, as those are made on dedicated lines. I will keep his diet as whole foods as possible for a week or two and see if it makes a difference. If we can't figure this out through dietary elimination, then I will look at further testing. I have looked at dh pics and read descriptions and he doesn't have fluid filled blisters, just raised, rough, red patches. Could it still be dh? I know it is hard to tell from pictures...
  10. He takes benadryl at times for the rash and I will check it. Otherwise, he is not on any meds. His vitamins are gluten-free. He rarely uses play doh and the other things. We have no pets. Our home is gluten-free and I think it is almost impossible for anyone to have snuck him a treat. He is very aware of gluten being an issue and refuses food given to him if it isn't approved by me. His preschool teacher is very aware and concerned and careful at school. He has alternate treats sent from home when others are eating snacks. He is otherwise in mine and my husband's care and we are very careful. We use some processsed foods but mostly from companies like Pamela's and Gluten free pantry. We do eat Lay's plain chips and Stax, as well as plain Kettle chips. Does anyone think that he could be allergic to something else as well? I will tighten down on incidental soy but it would be hard to get rid of corn or eggs and other foods, though I will do it if necessary. I am puzzled by the rash going away after one week gluten-free and then reappearing worse than ever.... I appreciate the feedback. I think the rash affects how he feels and his behavior and I want to eliminate it.
  11. Not sure why my pictures aren't showing up. Maybe a mod can help me....
  12. My son has been stricly gluten-free since 1-4-08. He has had some degree of eczema most of his life. A week after going gluten-free, it cleared almost totally and then a few days later came back worse than ever. I don't think it is dh - it doesn't look like the pics and has no fluid filled blisters. He is dairy free, as well, and has been for years. We use unscented All free for laundry and moisturize him with plain coconut oil - no soaps in the bath. Any thoughts? Could this be dh? He has patches behind his elbows and on his bottom, too, but his legs are the worst. The rash is rough and raised and itches. His pediatrician diagnosed it years ago as eczema but hasn't looked at it lately. Thank you for any feedback.
  13. Thank you for the feedback. Our home is gluten-free and we have given up eating out so the chance of cc is really low. I have replaced cc cookware and such. He is only moisturized with plain coconut oil - no soaps or lotions. Maybe it will just take him longer to heal up. I believe I will get rid of all soy, too, though it is incidental for the most part.
  14. My five year old son has been gluten-free since 1-4-08. He has had eczema most of his life. He has been dairy free for two years. We eat very little soy. Now he is off gluten. About a week after going gluten free, his eczema was miraculously almost gone. Then a few days later it was back as bad as it has ever been. I am puzzled. Is this detoxing? How long does it take? Should I be looking at other things like eggs or corn? We already used unscented laundry detergents and such. I am convinced the cause is dietary. I don't know how long it takes to get the gluten out of your system, though, and heal up your body of issues like this. I have googled pics of DH and it doesn't look like this. It looks like typical eczema. My other son has it to a lesser degree but his is almost gone. Any thoughts?
  15. The only person I trust to cook for my kids is my dad, who is a long term gluten-free celiac himself. His whole house is gluten-free. It is nice knowing he knows what is safe for them and won't make any mistakes. I get panicky about restaurants, too. We are new at this - about 6 weeks into it - so some of this may be just me getting comfortable with what is safe...but I don't think I will ever trust my in laws or many other people. I think I will always be packing things for my kids to take. I just feel better about it.
  16. The gene testing is actually not as valuable as the gluten sensitivity testing, IMO. We had the full panel done on 5 out of 6 of our immediate family members because I wanted to know for sure. This is not an easy lifestyle change to make and I was not sure I could keep it up for myself when I wasn't certain I had a problem with gluten. It turns out that the three youngest kids and I all have gluten issues. Hubby does not. So we are all gluten-free at home and hubby eats gluten out. I don't have intestinal symptoms. Mine are neurological. It was a valuable use of money, IMO, to get the firm results. Seeing it in black and white makes it very real. Also, my youngest daughter shows severe malabsorption and I have moderate malabsorption so it is good to know this so we could start on the road to healing. Hope that helps.
  17. Five of us have had this: Gluten Sensitivity Stool and Gene Panel Complete ($369) Gluten sensitivity stool test, tissue transglutaminase stool test (test for the autoimmune reaction caused by gluten sensitivity), intestinal malabsorption test, gluten sensitivity gene test, and for a limited time, free milk sensitivity stool test (Best Test Panel for Gluten Sensitivity). The combination of tests when ordered in this panel saves you greatly over ordering the tests individually.
  18. I often use humor as a coping tool so here is my original "Ode to Gluten". Not very good poetry but maybe it will give someone a chuckle. Ode to Gluten Gluten, oh gluten, once you were my friend. But now those days are drawing to an end. For gluten, my gluten, you were killing me, Causing much damage with villous atrophy. Gluten, dear gluten, I will miss you so, But it is clearly past time for you to go. So goodbye whole wheat bread and so long to Ritz You were eating up my intestines to bits! And farewell cakes, pastries and pie. No longer will you make me cry. Get your sticky fingers off my food and my snacks. Forever I am done with these insidious attacks. Gluten, oh gluten, you
  19. I don't have diabetes. In fact, my blood sugar is super duper. I think that the peripheral neuropathy is either connected to the B12 deficiency (though that should be resolved with weekly injections) or the celiac. I actually take coQ10 to prevent my migraines, though it hasn't helped any lately. They are worse, too. What a strange puzzle this is! By fungus, do you mean yeast? I'm sure I am full of yeast like most Americans are....
  20. I have been gluten-free for about a month now with no slip ups that I am aware of. I am very, very careful. But my symptoms, particularly the peripheral neuropathy, have gotten worse and not better. Is this common? I know that both of my boys seemed to have a detoxing period of about a week when coming off gluten. Their behavior was horrible. But it passed. Just looking for some hope that I haven't done permanent damage to myself and that these symptoms will ease up....
  21. You might google polycystic ovarian syndrome to see if that fits for you. I had it for years but having my first baby cured me of it and no problems in that area since.
  22. About 9 months ago, I had negative blood work for the celiac panel. Never had a biopsy, just a colonoscopy for different issues. My Enterolab results came back with two celiac genes, gluten sensitivity and a moderate fecal fat score absorption problem. That was my experience.
  23. Thank you for this feedback. I will check out the site. I am avoiding soy and canola oil but do eat the other foods. I use some mixes but am preparing lots from scratch.
  24. My experience has been this: I had tingling in my hands and numbness in my feet, horrible weakness and exhaustion, depression and lost a third of my hair. My B12 was in the very low normal range. Everything else tested out fine, including thyroid. My doc put me on B12 injections and after a few weeks, I was 90% improved. This was in October, 2007. My Enterolab testing came back yesterday and shows two celiac genes, gluten sensitivity and moderate malabsorption in the fecal fat test. I have been gluten-free for one month. My peripheral neuropathy symptoms have gotten worse after going gluten-free. I am persevering and hoping that I can heal in time and that it is a matter of a few months or so before this train turns around and the symptoms improve. I also get horrible migraine headaches and have had two since going gluten-free, which is a high number for me.
  25. I was off gluten for about two weeks before the test. Hubby is gluten lite, meaning he is gluten-free at home because I only cook gluten-free due to the kids and he eats gluten out. That is interesting about the IgA deficiency. I was very surprised that our scores were so high on the malabsorption. Thank you for your reply.
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