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

Severe Weight Loss


DanielleR

Recommended Posts

DanielleR Rookie

font="Times New Roman"] I was told I have Celiacs in May of this year. I noticed around the middle of June that I was losing some weight. At first, I was all to thrilled to lose some extra but, then I could not wear any of my clothing. Since May I have lost 36lbs. I know that might not be alot to some, but I can't stop losing it. I keep a food journal, and I am eating the right and correct amount of food, but I can't seem to find the problem. My question would be is this normal? If so, how do I control it, and maintain my weight or, even gain some.


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



Celiac.com Sponsor (A8-M):



AVR1962 Collaborator

Are you at a normal weight now or underweight?

Gfresh404 Enthusiast

What does your diet look like? How old are you? How much do you weigh? M/F?

It will take a while for your absorption to get back where it should - so until then you might not be absorbing everything you're putting in your body.

DanielleR Rookie

I am a 5'8 female and 29 years old . I was 160lbs. Just slightly over weight. Now I am 124lbs underweight. I normally start off eating fruit or cereal for breaskfast. I can not have dairy so I use rice milk. For snakcks I will eat some type of nuts or chips (I know there are bad)and more fruit. Lunch I do Chicken salad, or a salad that actually has chicken in it, or chili. Then I usually have another snack bfore dinner, which is normally rolled up sliced ham or boiled eggs. Then for dinner I eat a meat, veg and some kind of potato. I also drink water and soda. Just recently started a vegan multi vitiam.

domesticactivist Collaborator

I am a 5'8 female and 29 years old . I was 160lbs. Just slightly over weight. Now I am 124lbs underweight. I normally start off eating fruit or cereal for breaskfast. I can not have dairy so I use rice milk. For snakcks I will eat some type of nuts or chips (I know there are bad)and more fruit. Lunch I do Chicken salad, or a salad that actually has chicken in it, or chili. Then I usually have another snack bfore dinner, which is normally rolled up sliced ham or boiled eggs. Then for dinner I eat a meat, veg and some kind of potato. I also drink water and soda. Just recently started a vegan multi vitiam.

It sounds like you are eating a very low fat diet. Here are some ideas:

  • Eat soups based in bone broth. They should be gelatenous when they are cold. You can skim off the fat for cooking or just eat the soup with the fat left in it.
  • Eat avocados - they go great in chicken salad.
  • Sautee veggies with generous portions of coconut oil or duck, or other rendered saturated fat.
  • Make sure your breakfast includes protein and fat. Right now it's just sugar!
  • Eat nutbutters (You can make your own very easily in the food processor and might be able to get more nuts in than you currently eat).
  • Stop counting calories - are you feeling very full and sated? If not, you are not eating enough, or enough of the right foods.

DanielleR Rookie

I am still new to this, what soup can I eat that is Gluten Free? I have 3 super markets where I live so I may have to order off the internet. The problem is I have tried different foods that are not very good so I hate to order something and have one item shipped. I googled the nearest whole foods store and it's an hour and a half away, so we are planning a trip there soon.

domesticactivist Collaborator

Are there any farmers in your area? We get bones from them or from local butchers. Then you just add water and simmer the bones. Then you take the bones out and boil veggies in the stock to make soup.


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



Celiac.com Sponsor (A8-M):



missy'smom Collaborator

Danielle,

I lost weight immediately after going gluten-free. That left me back at my prior weight before I had gotten sick. However after 2 yrs gluten-free, I suddenly lost alot more weight. That left me dangerously thin and even though being gluten-free gave me back so much energy, I was still more fatigued than I wanted to be. I knew those 2 things were indications that I might have blood sugar problems, as well as the fact that I had other risk factors. Sudden, unexplained weight loss is a sign of diabetes and we here are at greater risk. I suggest that you get tested. If it comes back no problem you will have not wasted anything. Diabetes often goes undx too long. It is also not a cut and dried T1 or T2, there are several more kinds and a spectrum of blood sugar issues. Know where you fall on that specturum. It is SO much easier to manage the earlier it is detected. If you do get tested ask for an A1C and maybe an OGTT. A fasting blood sugar or any 1 time reading is not a good indicator. The more data the better.

As for diet, I recommmend that you have a sizeable amount of protein at each meal, preferably from eggs or meat. Vegeterain sources of protein, often count more as carbs from a blood sugar perspective(I'm not anti-veg. I'm a wannabe, but my BG does the talking ;). I was able to GAIN weight on a low-carb diet by increasing pro(from meat), when others usually LOSE weight on low-carb.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - ShariW commented on Scott Adams's article in Frequently Asked Questions About Celiac Disease
      4

      What are Celiac Disease Symptoms?

    2. - klmgarland replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    3. - Scott Adams replied to klmgarland's topic in Dermatitis Herpetiformis
      2

      Help I’m cross contaminating myself,

    4. - Scott Adams replied to Jmartes71's topic in Coping with Celiac Disease
      1

      My only proof

    5. - Scott Adams replied to Colleen H's topic in Related Issues & Disorders
      1

      Methylprednisone treatment for inflammation?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,908
    • Most Online (within 30 mins)
      7,748

    ebrown
    Newest Member
    ebrown
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • klmgarland
      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
    • Scott Adams
      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
    • Scott Adams
      It's very frustrating to be dismissed by medical professionals, especially when you are the one living with the reality of your condition every day. Having to be your own advocate and "fight" for a doctor who will listen is an exhausting burden that no one should have to carry. While that 1998 brochure is a crucial piece of your personal history, it's infuriating that the medical system often requires more contemporary, formal documentation to take a condition seriously. It's a common and deeply unfair situation for those who were diagnosed decades ago, before current record-keeping and testing were standard. You are not alone in this struggle.
    • Scott Adams
      Methylprednisolone is sometimes prescribed for significant inflammation of the stomach and intestines, particularly for conditions like Crohn's disease, certain types of severe colitis, or autoimmune-related gastrointestinal inflammation. As a corticosteroid, it works by powerfully and quickly suppressing the immune system's inflammatory response. For many people, it can be very effective at reducing inflammation and providing rapid relief from symptoms like pain, diarrhea, and bleeding, often serving as a short-term "rescue" treatment to bring a severe flare under control. However, experiences can vary, and its effectiveness depends heavily on the specific cause of the inflammation. It's also important to be aware that while it can work well, it comes with potential side effects, especially with longer-term use, so it's typically used for the shortest duration possible under close medical supervision. It's always best to discuss the potential benefits and risks specific to your situation with your gastroenterologist.
    • Scott Adams
      Based on what you've described, it is absolutely possible you are dealing with non-celiac gluten sensitivity (NCGS).  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.   Your situation is a classic presentation: a negative celiac panel but a clear, recurring pattern of symptoms triggered by gluten. The symptoms you listed—particularly the extreme fatigue, bloating, neurological-psychiatric symptoms like depression and anxiety, and even the skin manifestations like facial flushing—are all well-documented in research on NCGS. It's important to know that you are not alone in experiencing this specific combination of physical and emotional reactions. The only way to know for sure is to commit to a strict, 100% gluten-free diet under the guidance of a doctor or dietitian for a period of several weeks to see if your symptoms significantly improve. It is also crucial to rule out other potential causes, so discussing these symptoms with a gastroenterologist is a very important next step.
×
×
  • 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.