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Everything posted by Fundog

  1. I'm not actually very well versed in any of the tests, being rather new at all this myself, but I think a couple other people on here could tell you a bit more.
  2. A an endoscopy is the "gold standard" of diagnosis, so yes, an endoscopy would still be preferable to get a confirmed, beyond a shadow of a doubt" diagnosis. Be sure to keep him on gluten until all testing is complete.
  3. Yes, you should save up money to get the testing done. However, when you are ready for the tests, you need to eat gluten for three months before the tests, or they will not be accurate. Good luck!
  4. It is important to advocate for yourself and insist on tests you think you need, even for no other reason but peace of mind. Those doctors work for you, not the other way around. However: are you willing to go back on gluten for 12 weeks to get testing? Getting testing done while off gluten will get you nothing but a smaller bank account, sadly. If not, and you know you feel better without gluten, then be okay with that. Sometimes the proof of looking at ourselves in the mirror is the only "lab test" we really need.
  5. Pick up a good multivitamin that does NOT include extra iron. It might help bring up your folate without overdosing on the other stuff. Sometimes getting answers to medical mysteries like yourself is slow, hard work, but you're now one step closer. Keep pushing! I hope you feel better soon.
  6. I've never had an endoscopy-- I refused to continue eating wheat in order to get one, as I was shredding my skin to ribbons. (Very itchy and twitchy) However, I've had two colonoscopies, and I will have a third before I turn 50! but I don't think that has so much to do with celiac disease as my family and personal history. My dad had colon cancer at 51, so I had to start screening early, and they found polyps each time.
  7. Just so y'all know: asthma is a lifelong condition. It may become dormant, but you do not "outgrow" it. It can resurface at any time. It is genetic. It is part of what doctors call the Atopic Triad: Asthma, Eczema, and Hay fever. Family members will exhibit any one or combination of the three, demonstrating the genetic link between them. Many doctors consider the set to be autoimmune. One of my sisters and I have the whole set. Another sister only has two out of three, and the other sister has celiac, but no atopic conditions. A link, perhaps? It is a bit too coincidental to dismiss, don't you think?
  8. Hi. There are several people on here who are self diagnosed, for different reasons (I'm one of them). There is also such a thing as non-celiac gluten sensitivity. As for me, I still waffle between saying I have celiac and NCGS. All I know is, bad things happen when I eat stuff with wheat or gluten in it, so I avoid. Mostly I tell people I have a wheat allergy, which is true, and something they understand.
  9. Could it be your gallbladder maybe? A lot of celiac have gallbladder issues. You should probably have checked out, just to be on the safe side.
  10. It has been said on here that there will be ups and downs and occasional flare ups until healing is complete, and that could take six months to a couple of years. I'm glad you found a connection, though. Welcome to the forum.
  11. Well my levels haven't been tested. I suffer from what doctors refer to as The Atopic Triad: Asthma, Eczema, and Environmental Allergies, concurrently, and within a family group. The genetic link puts it in the realm of autoimmune disorders. Anyway, because I've suffered with these conditions all my life, my cortisol levels have always been elevated to keep my symptoms from sending me to the hospital. At times my poor body just can't keep up with the demand for cortisol and I have to take inhaled steroid medication and steroid creams. More than likely, my cortisol levels have merely dropped to those of a normal, non allergic person, and my body doesn't know how to handle it, lol.
  12. My sister's heart started doing weird stuff, as if she were having a heart attack, and after the ECG showed it was NOT a heart attack, they ran a ran bunch of blood, and that's how she found out she has celiac disease. So you're not alone in the "heart doing weird stuff" department. She also has no tolerance for high fructose corn syrup. It makes her light headed and dizzy. Tests found nothing wrong with her sugars (our father was diabetic, and her mother is also). Still, she avoids HFCS because a dizzy spell is still a dizzy spell, regardless of the cause. After I completed a wheat elimination challenge, and broke out in hives, my nurse practitioner explained that the cortisol levels had been keeping my reactions in check, then when I eliminated the problem my cortisol levels dropped off. When I tested the trigger (wheat) I didn't have the cortisol to protect me and I had a severe reaction. Since I've gone gluten free officially I've started having asthma symptoms out of season. I'm thinking the elevated cortisol levels had been keeping my asthma symptoms in check, but now they've dropped off, I don't have that safeguard anymore, and am experiencing a lot of bronchial inflammation, requiring medication. I don't know if that resonates with your experience or not, but I wanted to share, just in case.
  13. Usually, food allergies and intolerance are to the proteins in those foods, so I would say no to "rice protein."
  14. Yes. IBS (sometimes referred to as spastic colon) affects the colon, most notably with spasms and inflammation. Some people, especially those with hemorrhoids, might have some blood in their stools. A lot of other foods, such as onions, garlic, peppers, and anything remotely spicy will trigger an IBS attack. Triggers can be different for different people. Even emotional upset and stress can trigger a flare. Celiac Disease originates in the small intestine, with the production of antibodies specifically targeting gluten. However, you might be interested to know that IBS is one of the underlying disorders encompassing the greater disorder known as fibromyalgia (FMS), which is now recognized as an autoimmune disorder. Some people with FMS have found a reduction in symptoms by eliminating gluten from their diet.
  15. #sigh# When will doctors learn that humans very rarely present like the cases in their textbooks? And why should we have to do all of our own research and practically pull their teeth out to get them to listen to us and order the right tests? Are they actually learning anything in medical school anymore?
  16. EXCELLENT. I'm so happy for you!
  17. Yes, now you know! (Hooray for having answers?) The good news is, you can actually do something about it.
  18. Your iron is on the edge between normal and deficient. If you were pregnant, they might recommend an iron supplement, but otherwise, try increasing your intake of iron rich foods, like spinach. Not coincidentally, spinach is also very high in folic acid! FA and iron need each other. They work as a team. In addition, how much vitamin c are you getting? Iron also needs vitamin c in order to be more easily absorbed. They are BFFs. Ask your doctor what CCPs are, and the role they play. Go back in there with a well thought out list of questions (write them down) and make them explain everything to you in detail. Your problems don't necessarily have to be celiac disease. What you already have going on is serious enough by itself, and could have something to do with your inability to heal. Make sure you are getting enough calcium too.
  19. Good for you for pressing the issue and advocating for yourself! Just so you know, vitamin deficiencies even without celiac disease can answer a lot of questions, as a vitamin deficiency will cause all kinds of problems. And celiac disease is not the only cause of vitamin deficiencies. Do let us know what you find out, either way.
  20. The only thing I can think of is that they might be trying to spare your daughter a biopsy. If the genetic test is positive, and two positive blood tests, then maybe they could give a positive dx without a biopsy? I'm just guessing though. Can you call the pediatrician and ask for clarification?
  21. There are actually four different proteins in wheat: albumin, globulin, gliadin, and gluten. You could be reacting to any one or any combination of the four. It is possible to be both allergic to wheat specifically, and have celiac disease or non celiac gluten sensitivity at the same time. The symptoms you describe do sound a lot like a wheat allergy, however the only way to determine exactly is by having some tests done. I suggest you see an allergist. Also, my sister, who has celiac disease, has PCOS. It is so severe that she is infertile. Infertility is not uncommon in women with celiac disease. Go see an allergist and get some tests done!
  22. Most of the time I just use plain baking soda (yes seriously- it's a great and gentle exfoliate!) But what you want is plain soap, as in, the real thing. Ingredients to look for are sodium tallowate (that's beef tallow, chemically changed by lye), sodium cocoate (coconut oil chemically modified by lye) and another ingredient would be Olive oil- I don't remember the "ate" part, but they all start with sodium. These are the basic ingredients in bar soap. Lye is the cause of the saponification process, and when that process is complete the lye goes away, leaving sodium whatever-ate. If you just stick to plain old soap, you can't really go wrong, as far as gluten is concerned. I hope that helps.
  23. Yesterday we had to drive my son to the airport for his evening flight back to university. It's a three hour drive each way, and he had a long trip to endure, so that meant looking for dinner in a restaurant. I agreed to give Applebee's a try, with some trepidation. Well, when I placed my order, I told the server that I am allergic to wheat, and asked several questions about the dish I was ordering (the grilled chicken and watermelon salad). When she brought out my salad, she told me she had written "gluten" on my order, so then the cooks double checked the ingredients on every item for me, and cleaned the grill before cooking my chicken. It was delicious, I did not break out in hives or have any other adverse reactions. Overall, it was an excellent experience!
  24. If the doctor thinks it is a gluten intolerance, and some of his symptoms cleared up when you eliminated gluten from his diet, then that is probably what the problem is. As for the growth, it's only been a month. His body is working very hard to heal whatever damage has been caused up to this point. All of his energy is going toward cellular repair and regeneration. These things take time. Once that work has been done, his body can focus on skeletal growth. Talk with the pediatrician about these concerns too. I'm sure she will be able to reassure you. If it makes you feel better, take him in for extra well child visits until his growth rate improves.
  25. Lol, I know exactly how you feel! In the meanwhile, eat your fill of all the sushi and other gluten filled treats you love, until you have a proper negative association with them. My sister (who also has celiac) told me that she has since developed an aversion to what she describes as the "slimyness" of gluten grains. I have yet to experience that, since I regularly bake wheat bread for my family. However, I have developed an association between anything containing wheat and my dark fantasy of walls covered in sandpaper. When I tell people of this, they look very alarmed and quickly move all wheat containing items out of my reach, lol.
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