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About Chiron

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    Chapel Hill, NC

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  1. Thanks for the advice so far. I think I will try a modified elimination diet and see if there is anything else food related. I have heard that many people with Celiac have other intolerances. To be honest I am not looking forward to it- my diet is very carb/grain heavy. I eat a lot of gluten-free breads, rice, gluten-free pasta, and potatoes. I am one of those folks who was raised on processed foods and not eating many veggies and have never acquired the taste or learned how to cook them well. I am not confident I can cut back to 3-5 foods- but I will at least try to cut the major allergens and grains. I am worried that I won't get enough nutrients though. I am very active and need calories. I also battled an eating disorder when I was younger- so restriction is touchy for me.
  2. I have been poking around and have seen a couple of other threads on Crohn's and Celiac so I know there are several of you (us?) out there. In 2005 I was diagnosed with Crohn's after an abscessed mass in my terminal ilium was surgically removed, the biopsy showed the Crohn's pattern of inflammation. In 2008 I was diagnosed with Celiac (biopsy confirmed). However, when I was diagnosed with Celiac my GI doc said he thought that I had simply been misdiagnosed with Crohn's and I only had Celiac all along. After 4+ years of Gluten Free living I am still having a lot of problems- diarrhea on a weekly basis, body aches, fatigue, not able to digest foods (beans, nuts, lettuce, corn etc.), still deficient in Iron, Vitamin D, and B12. I am wondering more and more if my doc is wrong and I am actually dealing with both conditions. I had an endoscopy and colonoscopy in January following an obstructed bowel. Report said no celiac damage or signs of Crohn's inflammation, or obvious reason why things stopped working. Any advice out there? Part of me says I just need to double down and make sure I am not getting inadvertent gluten- but the biopsy showed no signs of villi damage (most recent Celiac panel also looked good). I am already very careful, so I am not sure what this would mean other than restricting myself to only eating inside my home with no processed foods (that aren't certified). Or do I follow the Crohn's path with a second opinion? I have a GI appt coming up in August but I am pretty certain he would discourage the Crohn's idea. I saw a post that said its pretty hard to mistake Crohn's and Celiac b/c they affect different parts of the bowel and in different ways- but wouldn't a GI doc know this? I am so tired of being sick all the time no matter how hard I try to follow the gluten-free diet. When I get sick seems to have no rhyme or reason- I am sick now and haven't eaten anything I didn't cook myself in the past 2 weeks. I'd really appreciate any advice from folks who have had to tease out these two diagnosis. Thanks!
  3. My nutritionist has suggested a number of supplements to be on to help symptoms related to celiacs including Fish Oil, B12, Iron, C, Cal/Mag, Glutamine, ProBiotic. My question is this: are my vitamins making me sick? I stopped taking them all at once for a lab test and didn't go back on them immediately and feel so much better. My first thought of course if gluten. I am on a tight budget so for almost all of them I have been buying the Whole Foods brand or their 365 label. It says contains to wheat ingredients but they are processed in a facility that processes wheat. Does any body have any opinions on if these are safe? And/Or are there AFFORDABLE brands readily available that are known to be safer? Thanks!
  4. Thanks for the ideas so far, they are very helpful. I think that giving up tomatoes is proving harder than dairy. I put salsa, tomato sauce, or ketchup on almost everything. THere are foods that I can still eat that I am having trouble imagining without a tomato product... turkey burgers, tortilla chips- or anything mexican like tacos, pasta, even my favorite rice and bean dishes. As for the pain killers ibuprofen does not touch the pain, I am on tramadol w/ tylenol. I try to only take it when I have to, but that is becoming more and more often, especially since i work on my feet all day.
  5. I have read enough posts to know that many folks with Celiacs have other food intolerances so I know I am not alone on this, but am feeling really discouraged. I was dx in January and have been gluten free and dairy free since. I have responded very well with almost all of my symptoms. The one that still plagues me, and has acutally gotten worse, is joint pain. Main arthritis tests come back negative, but I have severe joint pain (back, hands, hips, shoulders, knees). I don't want to live on pain killers and my Dr recently suggested eliminating nightshade veggies. So I have just started cutting out Tomatoes, Potatoes, Eggplant, Peppers etc. I am more than willing to try this to see if it helps the pain, but am feeling overwhelmed. My concern is that I am running out of food to eat. Ok not literally, but eating is getting more and more challenging. It is very hard to come up with a menu that has no gluten, no dairy, no potatoes, no tomatoes, no peppers, or red meat (by choice- used to be vegeterian). My old diet was very high in breads, and then became high in potatoes to compensate, and tomatoes have always been a favorite (not to mention ketchup, salsa, and marinara sauce). I need exposure to new food combinations. Help!
  6. Tonsil Stones

    I am going to try and be patient and hope this symptom clears up in time. I don't want to put myself through surgery unless I know for sure the tonsil stones are here to stay. I have lived with them for years now, I can last a bit longer. I don't relish the idea of surgery but just can't help but think living in a state of chronic infection is not good for the body either. I am fascinated to know that this along with a myriad of other things I experienced but Drs couldn't explain all have there roots in celiacs. I used to think I was a medical freak with all these random complaints. But now I know the root cause. Gluten
  7. I have my first GI appointment this week since my biopsy confirmed diagnosis. My follow up was bumped back several times with a Dr that is very hard to get in to see. This is of course, the Dr who on the day of my biopsy before the procedure said I do not have celiacs, but he would be happy to rule it out. You can read my symptoms in the signature and laugh b/c I have all the classis celiac symptoms. I do not expect the Dr to be waiting with a list of advice and follow up tests, and have learned to take the bull by the horns in terms of my own medical care. After all I have the most vested interest in me getting healthy! What questions should I ask -especially related to follow up tests? Are things like vitamin panels and bone density important? I know B12, Iron, and Thyroid are off so I do want to see if they have changed. I read somewhere that you should have your celiac panel run again 3-6 months after diagnosis to see if you diet is truly gluten free. Advice?
  8. Tonsil Stones

    I have read previous posts on the forum and realize that a condition that has plagued me since childhood called tonsil stones or cryptic tonsils is related to celiacs. It seems that most people see a reduction in this symptom- nastly smelly white lumps, swollen tonsils, terrible odor. I have been gluten free for four months now and am still having chronic sore throats with swollen tonsils and the white lumps. My questions: 1) How long did it take folks to notice a change in this symptom with the gluten free died? I am being impatient or not responding. 2) What treatments have worked for flare ups, besides surgery! Thanks
  9. I work in a deli but am careful only to prepare vegetable based salads even though much of what we serve includes pasta salad and other gluteny treats. Someone called out sick tonight and I had to step in and help out at the retail counter serving the salads we make. Though I tried to be careful, you can't on a high volume night- which means my forearms had lots of exposure. I have never had outward signs of DH meaning blisters etc, but I have noticed alot of itching at work compared to days off. Tonight I feel like my arms and anywhere I touched are on fire. It is 3:00 AM here and I have not gotten any sleep b/c of it. Can this be DH even with out blisters or rash? Sleepless in NC
  10. Thanks for all the replies. I found a support group locally and we had a pot luck style appetizers and it was one of the first times in a few months I have eated with other people! I hate feeling so isolated. I think I am going to have to be more assertive about meals out because I am realizing how important it is to me. There is a restaraunt that a group of friends and I have frequented weekly for months now- I will start by asking that chef to work with me. So far I have just not eaten anything. I don't want to live in fear of food- but I also don't want to keep getting sick. I have heard of restaraunt cards that explain celiacs- has anyone had any success with these? Any good ones on the web?
  11. I have only been gluten free for 2 months now since my biopsy confirmed celiacs, but when exposed to gluten I have a terrible response. I seem to be very sensitive to the smallest amounts. I have only tried to eat in restauraunts twice. The first time was at Outback Steakhouse and I got very sick, the second was yesterday at Pei Wei and am having another bad response. I chose both becuase they offer gluten free menus so my thought was that the store would be more familiar with gluten issues. Avoiding eating out is making me feel incredibly isolated. I am single and in my late 20's so that is where people my age interact mostly. I have gone a number of times and just not had anything to eat (or drink at bars) but I feel like such a freak. Sitting there watching everyone else enjoy normal food makes me very sad. For those folks who are very sensitive to gluten and cross contamination--is there any hope of being able to eat at a restauraunt again? Or am I now limited to my own culinary skills.
  12. I have been looking at the model you suggested and I like that it has two paddles and programmable cycles. Can this machine be used to make 1 or 1.5 lb loaves? I am just cooking for myself and can't come close to finishing off a 2lb loaf.
  13. Does anyone have recommendations for a bread machine that works well for gluten free breads? I have an old Sunbean machine that I used to make some gluten-free bread- and as I suspected it would, it made me very sick because I have used it for regular bread in the past. I used Bob's Red Mill mix and it made a decent bread - at least compared to the stuff I have tasted that is available in local supermarkets. I have read that gluten-free breads do best with two paddles or one kneading cycle. (My old machine does none of the above and it turned out OK.) I just read a review of a Cuisiinart that has a gluten free setting- has anyone tried this model?
  14. Ignorance is not bliss. The rice milk I have been drinking says "Gluten Free" on the label. Rice Dream, Enriched, Organic. I searched past posts on the site which say that this brand contains gluten. Has the product been reformulated- or can they falsley claim gluten free? Evidently past labels admitted to trace amounts, this one claims "Gluten Free." I will forego this brand just to be sure, but am curious for future reference as I try to navigate the gluten-free path.
  15. "Have you gotten a new toaster, new cutting surfaces, new wooded spoons, replaced you scratched pots and pans. Check you toiletries and all supplements for gluten. Although some of Amy's are gluten free, it still is manufactured in a facility that processes wheat. Some people here have reacted to some of Amy's products." ------ I did indeed do a major kitchen overall (thank to advice on this site). I have all new cutting boards, colanders, toaster oven, serving spoons, pots and pans etc. I live alone so there is no risk of cross contamination. I haven't checked my toiletries b/c I don't have the skin symptoms. Is this still a risk? I actually work in a commercial kitchen that is not Gluten Free (attached to a gluten filled bakery). My employer has been great about letting me focus on naturally gluten free dishes, but we strain pasta in the same colander in which we clean veggies. I do taste the dishes I make (less than 1 oz sample)-Is this enough to make me sick? I haven't taste tested any obvious gluten dishes but cross contamination is guaranteed. Yikes!
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