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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About hollyd

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  1. Hi celiac disease Family, Thanks for the interesting links. I would definitely think I had celiac for sure if I had your family history and blood results. It does seem like they haven't gotten it all worked out yet if they didn't find the atrophy in your biopsies. My blood work showed only elevated IGA IgG which is the sensitive marker but not specific. All the others came out normal. It makes it harder for me to make the case that it's celiac though the malabsorption of minerals despite supplementation and response to a gluten free diet and reaction to accidental glutenings tell a different story. Can I ask what sort of neuological symptoms you're having? I'm curious about that for myself. Thanks :-) Holly
  2. Hi Everyone, Thanks a lot for your replies. I was definitely eating lots of gluten before my tests and had never gone gluten free until after my tests. I guess I won't ever know if it's celiac or that non-celiac gluten intolerance. I just don't know how you can take all those supplements and have them have NO effect until you've built up 2+ years worth of it in your system. Some people have very serious negative effects from taking too much zinc and obviously you can from iron as well. I would guess that those who are diagnosed as celiac who have mineral deficiencies would have to supplement and it might take a long while before they get the benefits - which seems like what happened to me. it just isn't good enough for me to have him say he doesn't know why I had those deficiences that wouldn't respond to supplements for so long. I guess they do get very narrow in their definitions - if they see no damaged villi, they say no celiac and have no curiosity as to why you weren't absorbing minerals. I am definitely feeling better gluten free. I'm not sure whether I'll bother with the expensive dietician. I've cut out fruit for awhile now and I think I'll try adding some back in and see what happens. I am using a bath soap that has some wheat germ oil in it as I've been thinking if it isn't celiac it's not a problem - maybe I should see how I do with a totally gluten free soap. There is still one symptom that is mildly annoying that hasnt gone away yet. In terms of the length of the endoscope, what I read was that the majority of the damage would be at the stomach end of things where the food first enters and so that is why they biopsy from there.
  3. I had my biopsies done by a specialist in celiac who is also a researcher in the disease. They were negative, they said they were going to take them from several sites and take a large number of them. There is no evidence of damaged villi. I am now 4 months gluten free and the bloating and "runs" are gone. The only time I have a problem is if I accidentally get glutened and then I feel the way I used to. Except for when recently getting glutened from a restaurant I am no longer getting that flu-y achey muscle thing that I kept getting previously which had me filling sick for a week. The doctor is calling it IBS but I've never really had the symptoms of IBS. The "runs" were only in the morning - very wierd. He's questioning whether I have fructose malabsorption and/or lactose intolerance but I don't react to lactose when I eat it. The fruit I'm not so sure about. He cannot explain why it took 2 years of zinc supplementation to get my zinc to normal or more than 2 years of iron supplementation to get my iron to something other than scraping the bottom level of normal (below normal w/out supplementation). One would think that if I was not absorbing these things from my food the villi would appear damaged. He wants me to see some expensive nutritionist to check for fructose and lactose stuff but I'm wondering whether I can just do that on my own. It doesn't sound like rocket science. I guess you try various foods one at a time and see how you react, right? Anyone done this on their own? Can I still be celiac? There's just no way I can tolerate gluten anymore. Can it be just gluten intolerant without celiac and can you get malabsorption of minerals from that? Can having IBS make you intolerant to gluten? I was reading that gluten is not considered an offending food for people with IBS, quite to the contrary as whole grains are supposed to be good for it. Thanks very much for any information you can offer. Holly
  4. Thanks for your response. I'm still waiting for the 27th for my appt. to talk about all the results with the doc. but I think he said the gastritis was not severe and I've showed no signs of bleeding by inspection or two different occult tests. As I had a lot of difficulty getting enough zinc, until after 2+ years of supplementation as well, I'm thinking malabsorption. The more I look up gastritis the less I find diarrhea as a symptom which stumps me, unless I'm an anomaly. I seem to tolerate yogurt and cheeses in terms of not feeling any worse after eating them. But it might be time for a food journal if the doctor doesn't shed any light on this. I never ever drink any coffee, decaf or otherwise and I don't take any aspirin or nsaid's, don't smoke, drink very lightly and only occasionally eat mildly spicy food and don't feel any worse for it. I never have any pain. Thanks for your good wishes. If I learn anything that might be on interest to others after my doctor appt I'll definitely post it. Thanks for your input Kate. I think I'm going to be looking at that food journal after the 27th. I can say that I definitely got worse on the two weeks of 4 servings a day of highly glutenous food the doctor told me to have prior to the scope. It seems that should say something. I almost wonder if I'm not still trying to recover from that!
  5. Thanks TCA. My appt. with him isn't until the 27th so I'll see what he says then but on the phone he said it isn't celiac. I really have no problems being on this diet and just hoping it brings me relief. Holly
  6. Okay, I know this isn't a new situation on the board. What confuses me is that even my blood work was negative except for AGA - IgG which isn't specific for celiac. I had this done in Australia where I live, under the guidance of my doctor who is the leading researcher and doctor on celiac disease in Australia. He has trained the endoscopists in exactly where to go for biopsies and how many to take. Yet, I have consistent diarrhea, (without getting gross, it seems like the type that is common in celiac) it took me 2.5 years of zinc supplementation at the maximum allowable amount to get my zinc level to normal, it has taken 1 yr. + 9 months to get my iron to a far from ideal level despite daily iron supplementation, I'm tired so much that I don't feel like myself, prior to my scope my doctor told me to eat 4 servings of gluten foods a day with a concentration on pasta which I did do and which made me much worse. By the last day it was crazy, much worsening diarrhea and feeling truly awful. I have never tried going gluten free until 10 days ago (after my biopsies were done). I am not noticing any improvement yet but I'm determined to give this a fair try anyway. The only thing they've found is gastritis in my stomach which shouldn't cause any of these symptoms. Anyone have any idea how long I should try going gluten-free? With negative blood and biopsy do you think there isn't much of a chance of it being celiac? I have an appt. with my doctor on the 27th to see where we go from here. I just hope that going gluten-free for awhile fixes things. Is there such a thing as a non-celiac gluten intolerance that still causes malabsorption? Any advice is appreciated! Thanks:-) Holly
  7. Well I heard from my doctor and he got the reports back from the small bowel biopsies which show no villous atrophy. I asked him about the ulcers in the ileum that the doctor doing the scopes found and he apparently had no knowledge of that but said all biopsies found in the small bowel came back normal. I asked why the doctor had told me that and he guesses that what he saw macroscopically didn't bear itself out microscopically. Wish the doc doing the scopes had told me it doesn't mean anything yet. I was really afraid I had Crohn's. They found some gastritis in my stomach. So I have been so excited this wasn't Crohn's disease I haven't even thought about what to make of all my celiac symptoms now except that I'm strictly gluten free. I see my doctor on the 27th to find out "where we go from here" as he said. I think I'll start a new thread to ask for advice as I'm afraid this topic might not be relevant enough. Thanks for being there with me! Holly
  8. Thanks everybody. Yes, deodenal ulcers are a totally different thing. I've hardly ever used NSAID's in my life and haven't had them at all for a few years. Pixiegirl - does eosinophilic gastroenteritis cause ulcers in the ileum?
  9. Can anyone shed any light on ulcers in the ileum and celiac? I seem to read, if I'm understanding correctly, that there are sometimes benign ulcers associated with celiac called benign ulcerative jejunitis. Again, the diagnosis of celiac isn't in yet, I'm just trying to figure out what's going on with me. Any knowledge on this at all? Thank you.
  10. I just had upper and lower scopes yesterday. Lower is all fine. Many biopsies were taken to look for celiac (won't know for two whole weeks). I have all the symptoms, plain as day. AND, they found ulcers in the ileum (the lowest part of the small intestine). I've been trying to research causes for ulcers in that area and the only thing I seem to find is Crohn's Disease. Doctor said he biopsied the ulcers. In reading about Crohn's it seems to say a common symptom is pain, sometimes severe. I don't get pain, I get bloating and all that nastiness but not what you would call pain. I don't get an episodic type of thing either, I've been getting steadily worse over several years. First it was very low ferritin and zinc levels. The iron only came up to the bottom of normal with iron supplementation. After 3 years of supplementation the zinc came to a normal level. But in the meantime the gastro symptoms associated with celiac began and have gotten steadily worse. I understand that Crohn's is of a more 'comes and goes' sort of nature and doesn't get steadily and consistently worse, but I may be wrong on that. I did read a research study that says people with Crohn's have a high incidence of celiac as well. Major question if anyone can help me: are there ulcers of the ileum with celiac? Are there benign ulcers of the ileum with celiac disease? I know there are nasty ulcerations that mean the thing as already progessed so far that it is refractory celiac and it is a deadly cancer. Err I don't want that! I have gone gluten free starting today. I haven't in the past. No matter what they tell me I am going gluten free because it makes perfect sense to me to do that. My blood work was positive for the less good marker (IgG I think, can't rememer) but not for the good marker, but I know and the doctor agreed that those tests aren't very reliable. He's a celiac specialist. Does anyone know any other causes of ulcers in the ileum? Any help or information would be most appreciated. I've got to get myself through 2 weeks, the only thing that feels really positive is going gluten free now. The doctor told me to have 4 servings of wheat products a day for 2 weeks prior to the tests and I definitely got worse. thank you.
  11. Hi yunalesca, I live in Australia also. I was getting the worst run around from the GI my former GP sent me to. I had no confidence in her and so joined a yahoo group for celiac and asked for a recommendation for the best GI for celiac in my city. I am now being seen by a celiac specialist who really seems to know his stuff, on recommendations from several people in the group. I'm scheduled for my scope but haven't had it yet. Here's the link to the group: http://health.groups.yahoo.com/group/coeliacaustralia/ Maybe they will have another doctor you can go to for a second opinion. I'm not as knowledgable as other people here but I would do just as they say and go gluten free. Even if this doctor says I don't have it I have never tried going gluten-free but will most definitely do it if I come up negative - to see if it helps me. Good luck!
  12. Thanks everybody:-) So it sounds like whole wheat is worse than the other, maybe that's why I'm so sick, I only eat whole wheat except for pizza or the odd other thing. I bought two boxes of muffin mix LOL, I'd miss those, I guess I should get some chocolate cake, bagels (but you can't get a decent one in Australia where I now live :-( ) but topping up with wheat germ is pretty bad (good now) eh? I know beer is off the list for celiacs but is it a major offender? I hear you though, if I can't have any for the rest of my days I'm gonna get some in!! Hmm, I just had a craving for cous cous and so bought a box, that is durum wheat. What about the macrobiotic thing - wheat gluten? I'm a vegetarian so I'd eat it if I could find it. For the past several months I can eat anything and everything fattening and not gain one ounce. You wouldn't believe all I ate over the holiday period and I haven't even been active because I'm too low on iron and tired all the time. I have to admit I do like that part! Thanks Holly
  13. Hi All, I'm seeing a celiac specialist and he told me to eat 4 servings of foods with gluten in it per day for 2 weeks prior to my scope. (I am already eating gluten foods, he just wanted me to top up). Are there any foods that are more offending than others in the gluten category? Are whole grains more glutenous than non-whole grains? I want to make sure I get this right and get an accurate diagnosis. Also, can they tell just by looking if the villi are damaged or do they not know until the biopsy results come in? Any other advice for me? Scheduled for upper and lower scopes for March 31. Thanks a lot! Holly
  14. That's good that you made an appt. with the gyn. I would just be concerned that the pink could mean there is blood there and that should always be checked out. I can't see why they'd give you anti-biotics if it's a yeast infection! But let them figure out what it is first. I would stay away from the fruit for now too as fruit has a lot of sugar in it. I do know that if you take a pro-biotic it needs to be one with a LOT of live cultures in it, like a billion or more per capsule to really do an effective job. good luck with this! Holly
  15. I am awaiting diagnosis by endoscopy. I am now seeing a celiac specialist and researcher. This specialist has told me that I need to eat 4 servings of glutenous food per day for 2 weeks prior to my test to make sure an accurate result is achieved. That is in addition to eating gluten as I have normally been doing. I just wanted to pass that on. All the best to you. Holly