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Dr. Guandalini?


rez

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alamaz Collaborator

Gayle & Angel: are both of you still seeing Dr. Ehrenpresis? I'm in Arlington heights and I actually visited that practice and saw another doctor there. I was so irritated at how busy they were and the fact that they lost my x-rays I never went back. Maybe a diff. doctor would be a diff. experience? I'd love to not have to travel into chicago for appts. Also, do you guys know of any groups in the area? Wheaton is really too far for me as I work long hours and driving is usually the LAST thing I want to do in my free time.

Thanks!

Amy

  • 1 year later...

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Dawn235 Newbie

Kandi, Dr. Guandalini is wonderful and very friendly. I also live in Bettendorf and there are no competent doctors in the Quad Cities, that I can find, that know anything about Celiac Disease. I had to go to Iowa City, although the hematologist told me to "have a good life and just do what the Davenport hematologist is doing which was getting intravenous iron one hour one day per week. Then Iowa City called me 2 months later to tell me I had Celiac Disease. I told them I was suppose to have a good life and they had the wrong person. Anyway, I had both of my children tested at our family doctor and my son's bloodwork came back very strong positive. I took him to the only peds GI doctor in Davenport, he had a biopsy that came back negative and the doctor wanted him on a gluten free diet. I refused and took him to Dr. Guandalini and he did genetic testing on both me and my son. My son does not have Celiac in his genes. I then took my daughter to get genetic testing and she does have Celiac in her genes. I now am doing research for my sister that is very sick, 5'7" and 104 lbs and still loosing weight. She has an appt with the University of Chicago in May but in the meantime had bloodwork for celiac that came back negative...but was missing one of the tests that should have been given. Then she had a biopsy last Thursday and the doctor walked into the room and said, "She does not have Celiac Sprue". I was floored!! I know he can not see celiac. I then asked him what about her anemia. He said she is not anemic. I told him it was on the bloodwork he did. He had to go and check and said oh yeah she is a little anemic. But was more concerned with her thyroid being off and recommended her to see a endocrinolgist. We should receive the biopsy results this week but I am not expecting anything to come up. Anyway, ANGEL BENDER, I am curious of the doctor in Geneva, il that you saw. This doctor my sister saw was in Geneva and I am wondering if it is the same doctor. Could you let me know. His name abbreviated was Dr. S. Please let me know. Thanks.

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    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
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