Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Advice On Diet, Food, Weight Loss, What To Cut Out...


luvrdeo

Recommended Posts

luvrdeo Apprentice

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



JNBunnie1 Community Regular

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.

luvrdeo Apprentice

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 :)

pricklypear1971 Community Regular

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.

  • 4 weeks later...
GFceliacgirl Newbie

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.

luvrdeo Apprentice

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!

kittty Contributor

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.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



luvrdeo Apprentice

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

beachbirdie Contributor

...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 "Open Original Shared Link" and here is a direct link to one of their Open Original Shared Link 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 Open Original Shared Link and the Open Original Shared Link 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 Open Original Shared Link for some great paleo-type foods, which should be mostly friendly (with a few modifications for dairy or starch ingredients).

Good luck.

luvrdeo Apprentice

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 "Open Original Shared Link" and here is a direct link to one of their Open Original Shared Link 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 Open Original Shared Link and the Open Original Shared Link 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 Open Original Shared Link 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!!

luvrdeo Apprentice

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:

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,983
    • Most Online (within 30 mins)
      7,748

    CRae
    Newest Member
    CRae
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Wheatwacked
      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.