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I am a 21 year old college student near philly....I have been sick on and off since I was nine and I have been basically incapacitated for about a year before my college physician finally suggested celiac disease....my blood tests all came back high positives (all around 70-80 (IGG IGA and TTG))....I've been on the diet for about 4 weeks and it's going great, I get sick occasionally when I screw up but I'm getting better! Well....I'd love to talk to anyone about this stuff....anytime....Just sayin hi to all!!

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Welcome to the board XoHeatherxO

This is a great place for support and information. I am sorry to hear that you have been so sick for such a long time but glad you got a proper dx and are feeling better on the gluten-free diet!

Here are some helpful links since you are just beginning the gluten-free diet:

Safe & Forbidden Food & Ingredient Lists for Gluten-Free Diets

Gluten Free Drugs

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Hi Heather,

Welcome from another newbie!

I've only been trying gluten-free for almost 2 weeks, and still making big mistakes! I think you'll find help on this board, more than anywhere!

I have another thing I want to ask, if anyone can help! I was going to try giving up dairy, also. I have some, but not all. Yesterday I had cheese. It didn't hurt my stomach, but today I felt tired and lethargic. And I had been feeling better the days I ate gluten-free and dairy free. I don't think it was because the cheese wasn't gluten-free, but was it maybe becasue it's harder to digest, so made me so tired? This is still so confusing to me!

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I'd also like to welcome Heather. And sorry about your mishap Nita. Hope you get over it fast. One thing I've noticed since being gluten-free (with some slip ups) is that my bowels are changing. Fot the better hopefully. I'm still waiting for the results from enterolab. Yesterday I went to my allergist 3 hours a way. I started with him at the beginning of the year before I fell and broke my foot and couldn't get to him. This was at the recommendation (pushing) of a friend who goes to him. He keeps telling me that my immune system is screwed up and overreacting to everything on account of my being so sick growing up. Well, I told him about my checking out celiac disease and he knew about it and turns out he orders blood testing for it. Better testing than what my doctor ordered. TTG and whatever else. It was a complete panel and he asked me if I'd like him to order it for me. Of course I said if my insurance was paying for it lets go for it. So I had blood drawn yesterday for a FULL panel. Will know the results in about 10 days. He said he'd call me. I'm also going to be trying anti viral medication for a month (if you knew my health history you'd understand) which is safe according to him. And I'll be starting shots in about a week (allergy shots). Hugs, Carol B

P.S. It turns out that when I had skin testing on my back for allergies they also included eggs, wheat and dairy. those were all negative. Of course, that only works for severe problems like anaphylactic shock. But still it was interesing.

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I also wanted to mention that since I've been gluten-free I've lost another 5 lbs. I lost 40 lbs since being on Armour thyroid since last August. This is fine as I'm only 5'1" and had gotten up to 160. But now I'm just hoping it doesn't continue and I'm assuming the additional 5 has to do with being gluten-free. Maybe toxins leaving the body? My family says I look great but I just want to make sure I don't keep losing. That wouldn't be good. Hugs, Carol B

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Carol B, FYI, after I stopped eating gluten, I was able to stop taking all my allergy meds, too...I had environmental allergies something awful, all my life, and they are managed now with an occasional spritz of decongestant. I don't know how or if this applies to any other allergies but it was an unexpected and very welcome bonus for me--hooray for the gluten-free lifestyle!

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Thanks Dana. It will be interesting to see what all happens. I'm really interested in what to do with my thyroid medication which has done VERY LITTLE for me. Among the top 20 diagnosis before a diagnosis of celiac disease listed by the Mayo Clinic, I have 5 of them. Hugs, Carol B

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Wow Carol!

You seem to have many things that can be related to celiac disease! I'll be interested to hear your blood and enterolab results! Good luck! :)

I saw my reg. Dr. today for the first time since my tests by the GI. I wondered what she'd think about going gluten-free, with the neg. blood work and probable biopsy. She was surprised the blood test was neg., but was happy to help me with the celiac disease. It turns out a Dr. in that office has celiac disease, so they're responsive to it there! And they will get some literature from her for me, and a Dietician who is good with celiac disease. Yaaaay!!! I had such doubts, and it is turning out well, for help for me!

I acutally had a trainee "Dr. to be" first, then my reg. Dr. So, I got help from 2 persons! The trainee seemed well versed on celiac disease, surprisingly. She said that dairy won't further damage my lesions, but to avoid them for awhile, as they are hard to digest, and cause distress. Glad to know that when I fudge with dairy, it isn't a permanent thing! I can put up with the sluggishness occasionally, when I'm not careful.

Nita

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Hi Nita. Sounds like things are going positive for you. That's WONDERFUL. My health history goes back to birth and when my mother gave up trying to find answers for me I took over the job. That was when I left home at 18. 20 years ago when we moved and I AGAIN got worse I gave up on doctors (but not on prayer) and took matters into my own hands. I have read and tried so many different things. I currently have a formal diagnosis of chronic fatigue, fibromyalgia, low thyroid, sinus/allergies, and IBS. My father had chron's but now that I'm learning about this I wonder if he had it as well. To late to find out for him. Anyways, keep up the good work. Hugs, Carol B

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Hi Carol,

Thank you! I am doing very well. I think I don't have a lot of symptoms, so other than damaging my duodenum, I'm not that sick. If job changes hadn't stressed me out, and tiggered the bad pains, I would still be treating IBS! Actually, the Dr. said I was very healthy! (Lucky me, as a celiac!) And, I'm so glad to know how to get healthier gut-wise, and avoid those bad pains.

I had an older brother die of colon cancer, and wonder now if he had celiac disease and was asymptomatic, and never knew. Makes me want to try hard to heal inside, and avoid that! May be the same with your Dad, and Chrohns.

I wonder if some of your problems will diminish, when you are totally gluten-free? I hope so, and that you'll feel better.

It's amazing to me, how much less fatigued and depressed I feel now. And it's only been 2 weeks! I never knew depression, even as mild as mine was, could be related to food! What an odd disease!

Take care, and keep us posted with your test results!

Nita

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Hi Nita. I also had a grandfather with colon cancer. All very interesting. I still don't have the energy level of a normal person and it's been 3 weeks. My main doctor told me the other day that he's had kids whose symptoms disappeared drastically in a few weeks. then he had a women in her 50's who took 5-6 months to see improvements. I'm also on antivirals starting this week thank's to the suggestion of my allergist. I think they may be helping a little but we'll see. It's only been a few days. I start allergy shots next week. Only time will tell and I have no choice but to wait. LOL Hugs, Carol B

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Hi Carol,

With your allergies and such, it may take you longer to feel noticeably better. I'm hoping sooner, however!

When I eat dairy or something else a bit harder to digest, I feel more sluggish. But, if that's the worst I feel, I'll count myself lucky. But, I'm wondering if I don't have strong symptoms, how I'll know if I'm not getting traces, and therefore not healing as well. My Dr. said if after my next appt. in 60 days, I feel good, I won't need another endoscopy for years. How will I know I'm healing inside???? It seems others on this board have another scope in 6 months or a year. Hmmmm!

Anyone have an answer to this? Or, just wait and see?

Best of luck, Carol! Feel well soon!

Nita

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Hi Nita. I can tell you that Enterolabs recommends getting testing once a year to see how you are doing. Probably wouldn't need the full panel like I'm getting. Just a thought. Hugs, Carol B (who wishes the weather would settle down and quit changing. That really causes problems for me)

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Hi Heather, I'm mom to an 18 yr old daughter dx'd in Feb 04. We are from the Philly area and she will be attending Gwynedd-Mercy college in Bluebell. They have made her go through the ADA channels and are making some special exceptions for her diet. Just want to make sure that you know your school should be able to help you out by ordering gluten-free foods or by giving you cooking access if you are on campus. She still has bad days and is presently on senior week in OC/NJ starving:( Check out the Dietary Shoppe in East Falls. It is the best around for gluten-free foods. My daughter doesn't like the message boards and such. Her GI said it could take two years to heal completely and she has had setbacks with acid reflux. Keep with it, good luck, you are not alone.

Kathy

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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