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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 FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Advice On Diet, Food, Weight Loss, What To Cut Out...
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11 posts in this topic

Before I get into all my questions...here's a little background. I've had stomach issues for as long as I can remember - I'm 29, and I can date things back to early high school. A few years back, I finally went to the doctor. Tests and stool samples were run...results: you stress too much. Ok? Life goes on. About a year ago things got progressively worse - having to run to the bathroom with D multiple times a day, waking up in the middle of the night with horrible stomach aches, extreme fatigue, just overall feeling terrible - and not being able to lose weight if my life depended on it. 2 months ago I got myself into a clinical trial for IBS - I was excited, thought I'd finally get some answers. First I had go get a colonoscopy though. They found lymphocytic colitis, put me on steroids, and told me to get a blood test soon. The symptoms slowed down for a few days, but quickly came back - not as severe, but still there. Finally got the blood test done and it was a quite obvious I have celiacs. So...August 21st I quit gluten. Hasn't been too hard, just some minor changes. The first few days I dropped like 5 pounds and that bloat in my stomach was gone, I was feeling pretty good. A few days after that the withdrawal symptoms set in and I felt like I got hit by a truck. Soon this will pass right? 2.5 weeks later, those 5 lbs are back and I feel like I have a major spare tire sitting on my waist. I'm also still feeling extremely tired, and just crappy overall. I realize this might take time, but my question is...should I be considering eliminating other foods that might be causing me grief? My runs to the bathroom are still quite frequent, so I have a feeling something else is getting me. This "fat" feeling has really put a cramp on my social life. And if I don't eat every few hours I crash hard and feel like I could pass out. No energy whatsoever. I really need to get back to working out but I don't have it in me. I go to bed at 8:30 and struggle to wake up at 5:30 to go to work. Is this all just part of it? Or should I cut out more than just gluten? I am beyond thankful that I found celiac.com, as I feel like everyone understands, where my Mom thinks I'm crazy and overanalyzing everything! :) I just want to feel better, and lose these last few lbs that keep hanging around my midsection.

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I really think you would serve yourself better to spend your time working on feeling better for now, and worry about weight issues later. It's not going to be possible to lose weight safely until you are healthy. You should not be doing hard workouts while you're healing. Light exercise, walking, yoga, sure, but no cardio-kickboxing for now!

It is entirely possible that you have sensitivities to other foods as well, or you could just be dealing with the tiredness of a standard recovery process.

Celiacs are advised to stay away from dairy during their first few months on the gluten free diet, as the damage done to your intestines can make it difficult to digest dairy.

Keep in mind, Celiac has basically starved your body. So now that you have started to absorb nutrients properly, until your system levels out, it's not going to want to give up any calories in weight loss, because it's still in starvation mode. Of course, no two people are the same, so that's not universal. It may be that you will start dropping weight tomorrow, or it may be months before your body will get to a point where you can lose weight effectively.

Either way, it's really better to focus on making sure all the gluten is out of your diet for now. Have you spent any time on the 'newby' thread in the coping section? It's right at the top.

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I have heard from many (and read here obviously) that dairy might need to be eliminated for a while - I think I'll cut that out. I have read the 'newby' thread and gained a lot from there. I just re-read it actually, just for a good refresher! I'm trying to keep my diet as "whole foods" friendly as possible. Definitely working on getting a better understanding of it right now!

As far as not working out until I heal...that's a valid point that I really hadn't thought about. It makes sense though, for many reasons. Number one being...realistically, I don't have the strength to even think about going to a bootcamp session with my trainer! I've just always struggled with self-esteem and my body image, so to gain some and really have no say in it, healing or not, it's a hard thing to be ok with. I understand why it's all happening though.

With that being said...I'm going to try and go without dairy, and see if it helps some of my symptoms quiet down. Thank you for the kind post, this truly is a struggle for someone new! I accidentally got a major case of gluten by being naive and ordering a pumpkin spice latte Tuesday - wow, I am on the extreme side of being sensitive to gluten now!! Cheers to better days :)

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Definitely try cutting dairy out for a while. It's the culprit for a lot of people.

And it is hard to get the trace gluten out of your life - it can take a few months. Seriously. Learning the diet isn't easy.

If you find you continuously add weight, without eating food that should add weight (breads, pastas, sweets), then I'd request a full thyroid work up. Many people have both Celiac and Hashimoto's disease and the symptoms overlap. Hypothyroidism is known to cause rapid and unexplained weight gain.

Healing from Celiac is an up and down process, especially the first six months.

You don't have to stop exercise completely. I suggest walking 3-4x a week. Don't do anything that overly stresses your body (you'll know it when it happens). But I found walking helped me feel better during healing. If you feel worse for doing it, don't do it.

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I was diagnosed march 2012 with Celiac and at first felt amazing after a few months of going gluten free(or what I thought was gluten free). The first thing that you said was about the small modification in your diet alarmed me. Gluten is in everything now days. I still think I'm consuming it unknowingly or I know I must be because I struggle with symptoms so often. I so know how you feel about weight struggle. Bloating makes me look and feel 15 lbs heavier. I've always struggled with my weight and shouldn't be with my diet and how active I am. I need to get my thyroid checked too. My GI Doctor suggested Allign. I've yet to try but I'm going to.

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I was diagnosed march 2012 with Celiac and at first felt amazing after a few months of going gluten free(or what I thought was gluten free). The first thing that you said was about the small modification in your diet alarmed me. Gluten is in everything now days. I still think I'm consuming it unknowingly or I know I must be because I struggle with symptoms so often. I so know how you feel about weight struggle. Bloating makes me look and feel 15 lbs heavier. I've always struggled with my weight and shouldn't be with my diet and how active I am. I need to get my thyroid checked too. My GI Doctor suggested Allign. I've yet to try but I'm going to.

What I meant by it being a small modification was because I eat mostly natural whole foods anyway - things grown out of my garden, and lean meats. Never been big on pasta or bread or starchy foods. I am very health-conscious, so it wasn't a major deal to completely remove gluten. I have gained weight, about 8 lbs in a matter of 6 weeks - which to me is insane, because I still have "D" at LEAST 6 times a day. I got back on a probiotic, and am taking something for the colitis, but nothing and I mean NOTHING has changed. Such fun this is!

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It can take a while for everything to settle down, but it sounds like you're eating a great diet, and now you just have to wait for your body to catch up.

I lost 8lbs in the first week of eating gluten free. Whoo hoo! And then over the next three months it all came back plus 5lbs. Boo! My body was in a constant state of trying to find a "new normal" because it had been sick for so long.

But...that three month mark was the turning point for me. In the three months since then I've lost about 26lbs without even trying. My body is finally normalizing and is taking me back to a stable and healthy weight.

Just give it some time, and don't change anything in the meantime. Let your body get used to feeling healthy.

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It can take a while for everything to settle down, but it sounds like you're eating a great diet, and now you just have to wait for your body to catch up.

I lost 8lbs in the first week of eating gluten free. Whoo hoo! And then over the next three months it all came back plus 5lbs. Boo! My body was in a constant state of trying to find a "new normal" because it had been sick for so long.

But...that three month mark was the turning point for me. In the three months since then I've lost about 26lbs without even trying. My body is finally normalizing and is taking me back to a stable and healthy weight.

Just give it some time, and don't change anything in the meantime. Let your body get used to feeling healthy.

Thank you for the great advice - I've read the worst thing you can do is diet, which of course I don't do...I just try to eat right. My doctor said today that the weight gain is probably because part of my stomach is finally healing - he was surpised though that I'd gained what I had in 6 weeks. I guess after spending 15 years with this, some abnormal things are to be expected! I am halfway to the 3 month mark, and I hope by then things start to feel better. It's been a struggle because we can't get my colitis to calm down either...he told me to not give up though :) I am so greatful for this site, it's truly been a blessing for me!!! :D

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...First I had go get a colonoscopy though. They found lymphocytic colitis... Finally got the blood test done and it was a quite obvious I have celiacs...

...Is this all just part of it? Or should I cut out more than just gluten?...

Since you have colitis, you have a little more going on than just the celiac. Actually, they are related, and some think lymphocytic colitis might be an early stage of celiac. You might have to take some more drastic dietary steps to speed your healing.

There is a forum for people with lymphocytic colitis that you might find helpful, started by a guy who kind of "wrote the book" on the condition. You can find it at "perskyfarms.com" and here is a direct link to one of their introductory help topics in which they talk about some of the other foods and ubiquitous food additives/ingredients (soya lecithin, sodium phosphate, tapioca starch, to name a few) that cause trouble for colitis.

There are some diets that a lot of people find helpful...the GAPS Diet and the Specific Carbohydrate Diet were designed for people with colitis. They look overwhelming at first, but once you get going they are not bad. You can actually jump in without going through the early, restrictive steps if you want, that makes it easier to get started. We've learned the SCD because my daughter-in-law needed it, and it works for her!

We have found wonderful ways to make food on these diets, in fact we just made a grain-free pizza that was to die for! Check out chowstalker for some great paleo-type foods, which should be mostly friendly (with a few modifications for dairy or starch ingredients).

Good luck.

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Since you have colitis, you have a little more going on than just the celiac. Actually, they are related, and some think lymphocytic colitis might be an early stage of celiac. You might have to take some more drastic dietary steps to speed your healing.

There is a forum for people with lymphocytic colitis that you might find helpful, started by a guy who kind of "wrote the book" on the condition. You can find it at "perskyfarms.com" and here is a direct link to one of their introductory help topics in which they talk about some of the other foods and ubiquitous food additives/ingredients (soya lecithin, sodium phosphate, tapioca starch, to name a few) that cause trouble for colitis.

There are some diets that a lot of people find helpful...the GAPS Diet and the Specific Carbohydrate Diet were designed for people with colitis. They look overwhelming at first, but once you get going they are not bad. You can actually jump in without going through the early, restrictive steps if you want, that makes it easier to get started. We've learned the SCD because my daughter-in-law needed it, and it works for her!

We have found wonderful ways to make food on these diets, in fact we just made a grain-free pizza that was to die for! Check out chowstalker for some great paleo-type foods, which should be mostly friendly (with a few modifications for dairy or starch ingredients).

Good luck.

I think I've checked out that forum before, when I was first diagnosed with the LC. I know I've also looked into the SCD diet...it's probably something I should go ahead and try. I've very disciplined when it comes to food, so I know I could do it if I needed to and thought it would work. Last week I switched to decaf coffee, and a soft foods diet to try and calm my stomach down, and it's done me no good. Doc put me on a stronger dosage of meds and some other ones on top of it, and said if I don't notice a difference by Monday, we were trying something stronger. What a battle this is! I average 6 trips a day to the bathroom with "D"...it wears me out!!

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Went to see a dietician yesterday, she put me on a VERY STRICT paleo diet, and told me I'd probably have to eliminate grain, corn, and dairy for a long LONNNNNGGGG time. Possibly forever. I figured out last week I do not digest rice at all, goes right through me. Soooo...on to yet another exciting adventure of eliminating more foods! Sure hope it peps me up a little. :lol:

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