May 20, 2010 at 10:53 am #7769
I have been on the “traditional” gluten free diet for about ten months with only minor improvements in my health. Since seeing Dr. Osborne’s video on what gluten does to children, I feel that being totally free of all grains may be what I need to do. My story:
My husband and I have been married for almost eleven years, we have always considered ourselves to be generally healthy (until recently for me). We have four young children: our first daughter was the easiest baby, completely healthy and happy. When our second daughter came along everything was totally different. When we took her to the doctor time after time we were told she just had colic, or that was her temperament, and that we should not compare her to our older daughter because all kids are different. I started to feel guilty (for comparing them) and after awhile I just accepted this as true.
Eventually though, I saw the episode of Mystery Diagnosis that featured the little boy with celiac and asked her pediatrician to test for it. The bloodwork came back extremely positive (her ttG was “over 1000”), and celiac disease was confirmed by biopsy. She has improved drastically in the two and a half years on the diet, but is still not 100% in my opinion. We have never achieved “normal” blood antibody levels as of yet, which she will be getting checked again very soon. About a year ago we made our entire home gluten free and quit eating out entirely in attempt to eliminate any chance of cross contamination when her follow-up antiobody testing still revealed higher than normal levels (after being on the diet for a year and a half). We were so discouraged as we thought we were being so careful…..in hindsight, maybe it was the other “safe” grains we thought were gluten free.
After our daughter’s diagnosis with celiac, my husband and I and our other two kids (at the time our fourth wasn’t born yet) all received negative test results when screened. Throughout the next several years my levels of anxiety and fatigue gradually increased. I have seen two doctors who have both told me “that’s normal, you have young kids, you are busy, you’re tired.” I became increasingly irritable and found it just difficult to enjoy life at times.
Anyway, when our fourth daughter was born, I started to notice the same fussiness in her as when our second was a baby, “colicky”. I was breastfeeding her so I went gluten and dairy free last summer just to see if it helped: DRASTIC RESULTS (in her). I was so happy to have caught her problem early and have vowed to never give her gluten as long as I have control of what she ingests.
Since then I have turned into a research fanatic and we have had all our kids tested genetically. The two I have spoken of carry one celiac gene and one gluten sensitive gene, and the other two have double gluten sensitive genes. I myself had testing done through enterolab which revealed my two gluten sensitive genes and active dietary gluten sensitivity (even though on the traditional diet). Also positive to dairy, soy, egg & yeast sensitivities along with malabsorption nearing a severe level. I have been losing way too much weight (I am small to begin with) and feeling awful on and off for the past six months and I starting to feel desperate, just don’t know what else to do. Have lost most of my confidence in traditional medicine, but I’m starting to worry that something else is going on with me. I am self-employed in a professional position so I only work 2-3 days per week but feel that even is just wearing me out. I will have a good day or two followed by extreme fatigue, irritability, anxiety etc. I rarely have digestive symptoms.
I am thankful to have found this site and Dr. Osborne’s advice seems to resonate what my husband and I came to the conclusion of on our own, which is gluten free as prevention for all our kids and ourselves. Among our family we have actually seen eight doctors, none of whom are knowledgable about gluten. The thought eliminating all grains is somewhat staggering after all we’ve already given up and the social implications of it BUT I am despearate to regain my health and be able to enjoy our children and life in general. I look forward to learning a lot on here.
PS I’m having problems viewing all but the first video tutorial…..it’s still saying I’m a non-member even though I am logged in? Any advice? Thanks.May 20, 2010 at 12:16 pm #8548
Thank you for sharing your story, and welcome to GFS. You should be able to access the video tutorial information. Sometimes the system takes a day to get you fully registered before your access is allowed. Let me know if you have any more problems.
As our membership society grows, we will be adding new video tutorials, special expert interviews, and more to help you find a path to good health. If there is anything you do not see covered in our forum or tutorials, please send a request to email@example.com and we will work to get the topic covered.
Thanks again for being a part of Gluten Free Society!
All the best,
Dr. OOctober 6, 2010 at 7:40 am #8769
how r u doing? have you managed to try to find your path better now? looks like it has been awhile? I am sorry to hear you have had such struggles! but glad you have found some answers.
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