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Rebecca's mom

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About Rebecca's mom

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    Fort Worth, Texas
  1. I've been gluten-free since April, 2008, and went to see an ocular plastic surgeon today, because my right eyelid has started to droop. I was *this* close to getting an eyelid lift covered by my insurance when she said that she needed to do one more test, "Just to be sure". Well, wouldn't you know it, I "failed" that test, and now I have an appointment in May to see a neurologist to be tested for Myasthenia Gravis. And now that I have started reading about it, I am realizing that I have been having several of the symptoms associated with it over the past few months - all of which I attributed to either age or weight or both. I had been feeling so GOOD after going gluten-free, and then the past couple of months I started feeling really lousy. I guess it would be good to have a definitive diagnosis, but I was thinking that all of my little health problems were behind me. I guess it could be a LOT worse....
  2. I just went to the link for the listings of local Celiac Support Groups, and the last state listed is Montana. I am pretty sure that there are local support groups in the states that begin with the letters N-Z; is a page just missing, or am I going crazy?
  3. Just out of curiosity, what made you look at Celiac Disease in the first place? I do hope that you are able to find some answers to your questions, but even if your test results come back negative, you might want to give a GFD a try. I don't know if the WLS will affect your test results or not - it might be something to ask your GI and/or PCP. At the very least, encourage your son to have both himself and his son tested for celiac disease - it could save them both many years of physical suffering! Your son will likely find that he is able to lose some (if not most) of the excess weight that he is carrying around. Please let us know what you find out!
  4. I haven't noticed a problem with citrus fruits, but I haven't eaten any in a while - it will be interesting to see what happens. It appears that - in my case, at least - I personally am having a reaction to the Aspergillus mold that is used during the manufacturing of "food grade" citric acid. I have a similar reaction to vinegar, as well - apparently some people with mold allergies can have bad reactions to vinegar. I knew that I was allergic to mold - it never occurred to me that mold could be an INTERNAL allergy......
  5. I am so glad I ran across this thread - I've been having reactions to canned pineapple, and I couldn't figure out what could have been causing it! I have a different "reaction" from most people - I start itching uncontrollably when I accidentally ingest gluten, and it doesn't take much at all. I also have been having problems with an ingredient called "Natamycin", which is now a common additive in shredded cheese. Thanks so much for the info!
  6. Yes, high-fat is VERY important, and I ran across an article just the other day while researching diabetic information because my DH is pre-diabetic. If you will go to Diabetes Care - Diet Soda Study there is an abstract for a study which was just completed which shows a very compelling connection between diet drinks and not only a significantly high risk of developing Type II Diabetes, but also of an increased waist circumference. Interestingly, these same risks WERE NOT seen in people who drank "regular" sodas. This study looked at the results from a large number of people who participated in the Multi-Ethnic Study of Atherosclerosis (MESA) from 2000-2007. It also looked at 2 longitudinal cohort studies and adjusted for certain factors (demographics, lifestyle, etc.) which might have falsely skewed the data. The results speak for themselves. (If you want to read the entire Diet Soda/T2D Risk study, you can click on the "Full Text" icon in the right-hand column on the web page) There is also some interesting research out there (6-7 large studies, including the Framingham Heart Study) which suggests that low cholesterol is NOT a good thing (it actually INCREASES a person's heart disease risk), the serum cholesterol number BY ITSELF means nothing (the Total Cholesterol/HDL Cholesterol Ratio and the LDL/HDL Ratios are MUCH more important), and that - for women, at least - the serum cholesterol number means ABSOLUTELY NOTHING in terms of heart disease risk! My guess is - and I am NOT a medical professional, so bear that in mind - we are all a lot healthier when we eliminate gluten from our diets, eat GOOD high fat foods, and eat REAL sugar (in moderation, of course!). My DH has been so frustrated these past few years because his glucose numbers keep creeping up while mine stay fairly low. He has been doing everything "right" - lowfat foods and diet drinks - while I have been eating and drinking all of the things that are supposedly "bad" for you. My weight is the only thing that has been a problem, but since going gluten-free, I have managed to lose quite a bit of weight (40 pounds in one year), and it keeps coming off slowly but steadily. Hopefully the medical and nutritional professionals will start to sit up and take notice and realize that all of the things that we have been told over the past 20-30 years are just plain WRONG, and we will all be told that it is all right to start eating "the good stuff" again....... I know that I am a LOT happier since learning all of these things (especially the gluten-free stuff)!
  7. Our family has been gluten-free for the past year, and I have lost 40 pounds without even trying, simply by eliminating gluten from my diet. I have found, however, that I have to limit the amount of GRAINS that I eat - I eat potatoes and corn (to me that is a vegetable) with no problem whatsoever. I also have found that in order to LOSE fat, a person has to EAT fat - lots of it. I know that flies in the face of everything that we have had drummed into our heads the past 20-30 years, but there is plenty of research out there to back that up. Even the Framingham heart study found that the people who ate the most fat had the lowest amount of heart disease (regardless of their cholesterol levels), and the people who ate what they wanted actually appeared to LOSE the most weight. For me, I have found that if I eat more fat, I am satisfied more quickly, and I stay satisfied much longer. I guess that gives my body "permission" to release the body fat that it has been holding on to. Anyway, that's my $.02 worth - it's worked for me, even though I was skeptical at first......
  8. It would really depend on how much damage might have been there to begin with. Our youngest daughter was diagnosed a year ago with both gliadin and tTG numbers >100 (pretty high for a 7-year-old). At her last check-up a couple of weeks ago, her tTG was 6 (<5 is negative for villi damage). Generally, the higher the tTG number, the longer it will take for the villi to recover. However, I believe I read somewhere recently that there can still be some degree of intestinal damage in people who have been diagnosed with celiac disease, even with a "normal" tTG number. You may want to have a genetic test run - most doctors' offices can order this; you don't need to have an independent lab run it. The name of the test that you want to ask for is HLA Typing for Celiac Disease. That will tell you if your son carries one of the genes which are currently known to be associated with 96% of celiac disease cases. Just be aware, however, that 40% of the US population carries one or both of these genes, so a positive genetic test DOES NOT mean that a person has celiac disease, just that they are at a higher risk of one day developing it. No one is really sure what triggers celiac disease to activate in some people and not in others. If a person carries one of those genes, they are probably more likely to have some level of gluten sensitivity, and may find a GFD to be beneficial. It is possible that your son is Non-Celiac Gluten Sensitive (NCGS) - that is, he responds favorably to a GFD, yet won't test positive for celiac disease. Many celiac disease researchers are starting to acknowledge that this is a much larger group of people than originally thought. Hopefully they will be able to develop a test (other than a trial GFD) which will be able to detect this sometime in the future. What they do know is that celiac disease is the most extreme "form" of gluten sensitivity - the tip of the gluten "iceberg", if you will. If your son does well on a GFD, you may just want to "label" him NCGS and go merrily along your way - my husband and one of our other daughters are feeling MUCH better on a GFD, and neither one of them carries one of the two main celiac disease genes (they do, however, carry one of the genes seen in most of the 4% of Celiac patients who don't have either gene.......). They both had positive tTG results on a stool test, but not on their bloodwork. That (plus feeling better) was enough to convince my DH to continue on a GFD - he embarked on it under protest, but he immediately started to see improvements in his health. He is now fully committed to following a GFD, and even tells friends and coworkers how beneficial it has been for him! And believe me, we (the whole family) are the FARTHEST thing from health nuts that you could find........ I hope you are able to find some answers. The best advice that I can give you is to trust your instincts - if a GFD is giving you good results, then just continue with it, regardless of your son's test results. It certainly won't hurt anything - there are no known adverse side effects to this diet!
  9. Have you looked at the Dermatitis Herpetiformis forum? The itching is a "classic" symptom of this skin rash, which is 100% correlated with Celiac Disease, regardless of your bloodwork results.
  10. Our youngest daughter, Rebecca, was diagnosed 1 year ago with Celiac Disease. Her tTG number was >100, as was her anti-gliadin number. She had Borderline Stage IV damage to her intestines. She had NO symptoms - none. The only reason that her celiac disease was "caught" is that she has the most awesome pediatrician. Rebecca has Down syndrome. Her pediatrician has a step-daughter who also has Down syndrome, and her mother had recently been diagnosed with celiac disease. After their daughter started to have the same symptoms, they had her tested, and she also had celiac disease. Since her dad wanted to know if he needed to do anything different for a child with DS who has celiac disease, he started researching it, and discovered that people with DS have a 1-in-8 chance of developing celiac disease in their lifetime. Because this pediatrician has a special place in his heart for kids with Down syndrome, he has about 30-40 kids with DS in his practice. He took it upon himself to screen each of them when they came in for their well-child checkup. That is how we found out that Rebecca has Celiac Disease. "Dr. Frank" is a pretty special guy. Thanks to his decision to test his DS patients, not only have we been able to educate a lot of families in our local Down syndrome group, we have been able to "catch" a lot of children in our area who aren't in this doctor's practice who might not have been tested otherwise. We have also had several parents (mostly moms) who have read about the symptoms, gone in for testing, and discovered that THEY have Celiac Disease! I keep telling everyone who will listen that "A kid with Down syndrome saved my life", because as a direct result of Rebecca's diagnosis, I started on a GFD. I tested negative for celiac disease, but I had a rash that had been hanging on for 3 years - it cleared up almost immediately. It turns out that I had DH all this time - it didn't ever itch, so my dermatologist never thought to test it! I recently found out that I am the parent who passed along the Celiac gene to our daughter..... If it hadn't been for our daughter coming into our lives 8 years ago, none of this would have happened. We have been so incredibly blessed, both with our daughter and with our daughter's doctor.
  11. The bloodwork will only tell you if you have almost TOTAL villous atrophy, not mild - many people (myself included) think that ANY degree of villi damage warrants going on a GFD. You may simply be Gluten Sensitive (I think they are starting to use the term Non-Celiac Gluten Sensitivity [NCGS] to describe this). However, if you feel better on a GFD, then by all means get on it and STAY on it - it certainly won't hurt anything! You can also request a genetic test (HLA Typing for Celiac Disease) to see if you carry one of the genes that are known to be associated with celiac disease - if you have one of them, then you will have one more reason to stick with a GFD, regardless of your antibody test results. My antibody tests were negative, but I carry one of the genes and had what I believe to be Dermatitis Herpetiformis - I wish I'd known about celiac disease a lot sooner! You are fortunate to have found out about this so early - trust your instincts on this, and don't let anyone tell you that you don't know what you are talking about. Incidentally, my sister told me (right before she died) that one of her doctors "had to be good" (an opinion NOT shared by me), because she graduated from Harvard Medical School. My reply to her was that SOMEONE has to graduate at the bottom of the class - and who knows where ANY doctor ranked in their class (other than the doctor and their school)?
  12. You may want to check out R.O.C.K. (Raising Our Celiac Kids) - I think they have a website. Also, Woodbine House Publishing puts out a lot of books on different topics for kids with specific health issues - Down syndrome, Autism, ADHD, Celiac Disease, etc. - you may want to ask to be put on their mailing list and request a catalog from them. Our youngest daughter has Down syndrome (and was diagnosed with celiac disease last year), so we are well acquainted with Woodbine House - they are absolutely wonderful folks! They do have a website, but I don't know it off the top of my head.......
  13. This isn't something that adults usually have to worry about, but most people forget that Play-Doh has wheat in it. If it gets on a child's hands, the hands go in the mouth, and they get a gluten reaction for no APPARENT reason. Same thing goes for sheet rock and joint compound - which our family found out the HARD way last month while doing a home renovation project...... You may want to contact your local Gluten Intolerance Group (GIG) - the main website is www.gluten.net, and from there you can look for a group in your area - they should be able to direct you to a local pediatric GI who may be willing to see you immediately, given your daughter's symptoms and your family history of Celiac Disease. Incidentally, you can have the genetic test run anytime - a person's genes aren't affected by eating gluten. Ask for the HLA Typing for Celiac Disease test - if that comes back showing that she carries the gene for celiac disease, then you can decide to go ahead and continue with a GFD, regardless of the results of an antibody test and/or a biopsy. Many GI doctors are hesitant to recommend a GFD for someone if they don't have a positive diagnosis, because they are still under the mistaken impression that following a GFD is difficult. You need to do what YOU feel is best for your little girl - you're already doing that, so keep up the good work! Good luck, and I hope you find something out really soon -
  14. I had the same problem - don't know what might help "internally", but I just went out and bought some really "strong" clear nail polish (Sally Hansen's Triple Strong Advanced Gel Nail Fortifier) and have been using that for the past month or so. It has helped a lot. Just about any nail "strengthener" should work - and I am NOT a nail polish kind of gal - and I suppose acrylic nails would work, too. Hope you find an answer!
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