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Advice On Diet, Food, Weight Loss, What To Cut Out...
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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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    • Hello Everyone, This is my first post here and I am writing to seek help from experienced people here. I have been suffering for over 4 years now and still no where close to having a solution/ satisfactory diagnosis of my problem. My problems started in Mar 2012 with sudden diarrhea which would not go away for days. At first, I was given general antibiotics medication which would help bring down the frequency for some days and then it would come back. Since then it has been going on. I am giving a time line and the series of tests and procedures I have gone through. Would like opinion from experienced and experts here. I can send the scans and reports if required. Would really appreciate the help. Male, Indian origin Mar 2012 - onset of symptoms - multiple bouts diarrhea - spaced 3-4 weeks, bloating, weight loss (to start with I was 74 Kgs), GP managed with antibitocs and loperamide for months Dec 2012 - consulted a GI doc towards end of 2012, Colonoscopy done - conclusion was "IBS" - was advised to manage stress. use Rifaximin and immodium Jan 2013 - Aug 2013 kept moderately fine for 3-4 months ..again started getting frequent diarrhea + weight loss (was around 70 Kgs) Oct 2013 - Consulted another doc, MD - stool and blood test - Ecoli and high Eosinophil Count, medication done for 5-6 months, montinored eosinophil from nov - Mar: always kept high.. came down but then again shot up in a month Mar 2014 - Consulted another GI expert - Endoscopy and duodenal biopsy done - H Pylori and Unremarkable Villious pattern, (weight 68 Kgs) - On and Off diarrhea continued. Given: Ivermectin July 2014 - again same doc - Blood test done: High Eosinophil count,  Colonoscopy and Ileum biopsy - preserved villous architecture, features of eosinophilic enteritis; Endoscopy  + duodenal biospy again - numerous H pylori bacteria, Preserved villous crypt ratio, features of eosinophilic enteritis > conclusion: I have eosinophilic enteritis. Started on Prednisolone (steroids) Aug 2014 - 3-4 days of severe diarrhea> weight came down to 65 Kgs. Hospitalised for 3 days - continued on Prednisolonerios Sep 2014 - After 10 days only again a serious bout of diarrhea - hospitalized again - put on IV fluid for 8 days - weight 59 Kgs. Colonoscopy + biopsy done: features of superimposed c. difficile colitis, non-specific mild colitis > c. difficle test came out negative. CT Enterolysis +Scan done: mesenteric lymphadenopathy > nothing wrong acc to docs. IgA deficiency found - diagnosed Celiac - advised for Gluten free diet.   Sep 14 - May 16: continued gluten-free diet, gained weight upto 63 Kg in Jan 16, but then started losing again and came to 59 Kgs in May. No signficant diarrhea. Minor issues. June 16 onwards: Again diarrhea started, still on gluten-free diet, weight lost - 54 Kgs now. hospitalised again under same GI doc - blood test - eosinophil high, CT Enterolysis done: Showing mucosal thickening in Jejunum and Ileum; Enteroscopy (going in jejunum) + jejunal biopsy - jejunal erosions + villous blunting, marked atrophic with V:C ratio of 0.5: 1 to 0:1. HttG blood test done - Came out negative> Conclusion : No gluten exposure (how?) + Refractory Celiac disease. June - July - have been suffering from continuous diarrhea (goes off for 5-6 days and comes back, bloating, trappings in abdomen - waiting for I don't know what. On Rifaximin + Ivermectin + Codeine Sulphate (for diarrhea) I am very depressed and have no clarity on what's going on. If it is celiac, why am I not doing better on gluten-free diet. If the villous damage is still there in small intestine, then why did I kept fine for Sep - May period? HTTG - negative now but was NOT taken in Sep when I was first diagnosed with celiac. Can we trust negative HTTG now and conclude that it has come down? I am 20 kgs down from my ideal weight and still going down. Have no clue what NOT to eat to stop this. Why is eosinophil always high. Can any of you expert help me to put my case to docs in other countries? With lots of hope, Alok          
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