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Found 7 results

  1. Good afternoon, My 5 year old daughter has just received her diagnosis of celiac's disease after a biopsy. I have not met with the gastroenterologist since the diagnosis (apparently next appointment will only be in a few months) and we have been told that we will be contacted for an appointment with a nutritionist in a few weeks. Until then, I am left with a lot of questions. This is day 2 of going gluten free and I am feeling slightly insane. I see bread crumbs everywhere! I am trying to think of all the ways cross contamination can occur and have designated a small isolated section of my counter as the GLUTEN counter, where anything bread related must happen. As I fiddled around making three different lunches to accommodate my 4 small children's particular dietary needs and preferences (the 5 year old with celiac is the eldest, and one of my twin babies has an egg allergy), I thought I would lose my mind. Bread crumbs would travel on my fingers, I worried about transporting toast to a plate near hers, and of course, the dreaded idea of toasting her first ever slice of gluten free bread in the regular toaster. I must have washed my hands 10 times and I had to restrain myself from making her eat at a separate table lest her twin baby sisters started to toss their crusts around. I am making a list of things to buy to use exclusively for gluten-free stuff: I need new wooden cooking instruments, a new nonstick pan, a new toaster... or do I? There is a part of me that wonders if I am succumbing to some kind of collective gluten paranoia. Please don't get upset at me for feeling that way! I just have trouble wrapping my head around the idea that a tiny trace of gluten left in a pan that has been cleaned could really do any damage. I have tried to think of the gluten as a poison. It's not like I would accept "just a wee bit of arsenic" in my children's food. But then again, I am visualizing gluten like a feral cat clawing away at my daughter's gut, and then thinking about the little speck of gluten leaving a tiny pinprick... which doesn't seem so concerning. So how bad is cross contamination REALLY? In your experience, based on your knowledge, based on your opinion. I'm open to your thoughts. But, please understand that at this time, I am NOT considering turning my home into a gluten-free home. I don't want everyone to be deprived because of one person's diagnosis, and quite frankly I can barely imagine how I will finance one person's gluten-free diet, let alone 6! Thanks for your feedback!
  2. Hi guys! I'm Allie, was diagnosed about two weeks ago. I've been receiving some conflicting advice about whether or not to continue consuming dairy, on all the blog posts I have read and general internet research, everyone says to avoid or lessen dairy intake until you are healed, which means been gluten free for about 12-18 months. But my dietitian who I recently started working with, who has been working with celiacs for 15 years, says that if I lessen my dairy intake I'm not only depriving myself of calcium but putting myself at risk for becoming lactose intolerant. Which I definitely do not want... However I do notice that recently (not sure if this is after I eat dairy or not) my stomach makes some odd rumbling noises... Thoughts?
  3. Hi yall! New to this blog, but really glad it exists because I have lots of questions. First off, I'm Allie! I'm 17 and newly diagnosed Celiac after about 3 years of searching for answers. I initially went gluten-free on the recommendation of a friend, I felt better in about a month and then my pediatric gastroenterologist had me do the gluten challenge, and my symptoms were the worst they have ever been, and ones I barely noticed before became very present. I did the biopsy and was diagnosed, it's been about 2 weeks and my symptoms are still pretty bad, although my diet has no known sources of gluten or cross contamination. Wondering if anyone has any input on healing post gluten challenge, any tips or how long it took for you would be quite helpful! Thanks
  4. I have SO much going on in my life........I know I could find all this online but don't have time to go searching and figured I would start here. I have Diabetes / HTN / Asthma & over past 4 years several admissions for "syncope of unknown cause" for which I've had extensive work ups My youngest son has Down Syndrome & multiple health issues including Primary immunodeficiency, and was recently confirmed to have Celiac disease & so I was tested too. Im waiting to hear back from my Dr, but from test results Im pretty sure Im positive too, so a couple of quick initial questions that I need to get answered quickly to get me going. 1. Is an endoscopy essential to confirm, can't you just go gluten free? 2. What are the consequences of not going gluten free? 3. Do I need any specialist or can family Dr manage this Looking at the lists of things to avoid........french fries? Am I supposed to NEVER have a burger & fries from 5 Guys anymore? Can you cheat a little? Im a nurse, and a diabetic & know it takes an average of 2 years for Pts to really switch their diets.......its incredibly difficult. I can't imagine going 100% gluten free 100% of the time. Im also pretty asymptomatic, maybe some constipation issues sometimes, but I would never have guessed I'd be positive. I know the consequences of not following my diet for my diabetes, and even knowing that Im going to cheat sometimes.........eating is one of lives main pleasures and so I will choose to shorten my life a little to enjoy it more while alive. So my initial thought is just to ignore this. Im 46 and essentially symptom free - so the 1st thing I need to know is what is the consequences long term if I just ignore it? Thanks in advance. Felix
  5. Hi everyone, my name is Beth and just received my Celiac diagnosis today. Needless to say I am way overwhelmed about what I can put in my mouth right now and what I can't. I don't have an appointment with a nutritionist for two weeks. My boyfriend was nice enough to go through my cupboards and put aside things we know I can't eat and made a space for foods I need to check up on. I was wondering if someone could let me know about a few things and if I can eat them? Is it just soy sauce or all soy products ( oil for example)? How do I know which products that state they are gluten free really gluten free? Can I eat pepperoni? I don't mean to be a pain and ask so many questions, I just don't know anything about this and can only read so many books before I need to eat again. Thank you in advance for any help that might be directed my way.
  6. Hello. I am hoping to find (if nothing else!) some peace of mind here. I am a 33yo female with a history of hypothyroidism (x 10 years now.) Ever since my thyroid went bad, I've had some weird on and off chronic symptoms (mostly joint and muscle pain, indigestion and thinning hair) that have not been able to be explained, but also have only slightly improved since going on thyroid medication. Luckily, I have a great PCP and I am a nurse myself so I am confident Im on the right thyroid medication and its working for me. However over the past year, some other lovely symptoms have developed. The most irritating symptom is skin rashes- a mix between excema and possibly some dermatitis herpetaformis. Problem is, the dermatitis lesions are usually in my scalp, and of course NEVER around when I go see my doc or the derm, so I am self diagnosing. But although the break outs are infrequent, Im pretty sure they are DH and nothing else! The excema is constant, it never goes away now. The muscle pain, which had improved some a few years ago, is now back, and I have random swelling of my lymph nodes in my neck. The worst symptom which had recently developed was horrible diarrhea- ONLY at night (middle of the night, usually) with horrible stomach pain. The diarrhea was watery, sometimes oily, and only at night. After lots of trial and error (and googling!) I thought hey- Maybe this is a gluten issue. So I went to my doctor. My TTG/EMA were negative, however my IgA was low. Not horribly low- just about 10 points below normal. So my smart doctor reccomended a scope (colonoscopy or endo- not sure.) So I went to a GI guy. He was - well not great. I had randomly had a cat scan of my abdomen maybe 3 months before my visit, so he said, if my cat scan is negative, chances are nothing is wrong with my gut. Im probably just horribly constipated and thats why I get diarrhea at night!!?? He put me on massive amounts of fiber (um, hello, ask me about my diet- I eat tons of greens and fruit daily!) and then wanted me to do a big clean out (A FIVE DAY PREP) for a colonocopy. It never happened, because the meds he gave me for the prep had fake sweetners in them- I have been allergic to nutra sweet for as long as I can remember. (I told him that, too.) So, the scope was never done, and I've never gone back to that GI. I tried an elimination diet and was pretty sure it was the darn gluten. (sniff, tear, no more pasta for this italian girl.) I've been gluten free for about 4 months now. NO diarrhea at all. No belly pain at all. Joint pain is better. Havent had a DH lesion in awhile, though my excema is the same. So I am due to return to my primary doc this monday and I want to get tested again. However ,Im gluten free now, and the thought of eating gluten for WEEKS or MONTHS sounds so painful to me! I know- if you know your intolerant, why get tested? Just eat gluten free! Well, as a nurse I know that the immune response that comes with Celiac disease can be very dangerous. So, I would like to know how careful I need to be. I rarely go out to eat ,but when I do, I have not been asking about sauces/dressings. (I dont eat pasta or bread or breaded stuff, of course.) So - do I need to be that careful? Also, this May, I am getting married! We have talked about starting a family soon. For pregnancy- is it dangerous to not know your diagnosis? Can it make morning sickness/nausea/constipation while pregnant worse? Because Im concerned about all of that- I have family members with a history of hyperemsis- or not keeping anything down while pregnant. Would genetic testing be enough (so I can stay on my diet) and if so, how can I get that done? Of course, Im going to ask my doctor all these questions- but I thought I'd find some help (or peace of mind) in the experience others have had. I am new to this site, but it seems as though there is a wealth of information. Thanks everyone, and havea great weekend. RNRN
  7. Could use a little support or feedback or something. Kinda in limbo at the moment. [history] Had symptoms which celiac could explain for *years.* Primarily (but not limited to) intense abdominal pain/GI issues and fatigue/energy issues. Talked to my doctors last year, but unfortunately I didn't talk to my PCP herself, and I ended up having my worries sort of blown off by the nurse practicioner I spoke to (we did eliminate thyroid issues, diabetes, and severe anemia as causes, at least; this year we also eliminated vit D deficiency, liver issues and gallbladder issues). Talked to my PCP *this* year (Late September) and made sure she knew just how bad the pain is and how often it happens, and she ran a couple of tests including a celiac panel, which she and I both thought was a short in the dark. She called me back early October and said it looked like celiac was a good possibility, which was initially really depressing, but have since done a bit of research (including reading through some of the stuff you guys posted here) and switched over to hopeful, because if cutting out gluten would actually get rid of the pain issues and the fatigue/energy issues, Oh My God would it be utterly worth it, and it seems like it wouldn't be nearly as restrictive as I initially feared. [/history] Anyway, met with GI specialist a few weeks ago who said based on test results I amost definitely do have celiac. (TTG, IGA 15 (flag reference range =<4), GLAB IGG >100 (flag range =>20), GLAB IGA 58, flag range >=20)- all with significant amounts of gluten-y bread products in my regular diet, in case anyone asks.) She reccommended endoscopy to get more data. Had upper endoscopy today. Not a fun thing, but glad it's over and done with. She did the endoscopy herself, and said there were no obvious signs of celiac disease, but she's waiting on biopsy results, which we will discuss when we meet next week. Meantime she wants me to get the blood tests re-done in case the blood test itself was a false positive, which I will do on Saturday. She still seems convinced I probably have it and that I may be either be not be in a particularly severe phase with it, else the damage is farther down than she actually went. She's still encouraging me to stop gluten now (now that the endoscopy's done), so I can feel better asap. I at this point am actually *hoping* it's celiac because that at least points to a solution, and a relatively simple one at that. I'm pretty dang sure the energy problems and pain I get really *aren't* normal, and I've been sort of in denial about that for a long time. If it's not celiac, that means there's some other cause, and I'm already very, very tired of doctors and tests (and taking time off of work and away from leisure time to see doctors and get tests, night I add.) So now, it'll actually be even *more* depressing if it's *not celiac. Anyway- anyone had similar experiences? Knowledge, wisdom, hope, etc. to empart? This forum has actually already helped me tremendously, though I haven't posted yet. =)