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

Frustrated With My Diet That's Not Working


Bexxa

Recommended Posts

Bexxa Rookie

So far I've eliminated: gluten, xanthan gum, rice, and corn. I take a Lactaid pill when I eat dairy. I need to drink milk to take my meds else I will get ill, I also eat cheese and cottage cheese for protein.

My newest symptom: ingestion of ice cream (well, frozen yogurt) results in a severe depressive state to the point where I'm considering doing myself in and crying uncontrollably. Yes, I tried ice cream, because I found a brand that was gluten free and that was without xanthan gum.

Aside from that, my mood overall is unstable. Sometimes I'm up and sometimes I'm down. Today, I'm up. However, the fatigue is doing me in. I sleep too much, it's difficult to pry myself out of bed. My rash is back. Concentration is really difficult in class, memory problems are abudant. I'm spacey, zoning in and out a lot. I'm constantly nauseated. Periodic lightheadedness. Also, my hair is falling out, it's incredibly thin right now. I'm horrified that I'm losing my hair, not exaggerating on the word horrified either. So, somehow I'm eating something that's not agreeing with me. Can anybody tell me what it could be. These are the ONLY foods I ate for the past 2 weeks.

- prepackaged peach fruit cup (no stated gluten, xanthan gum, etc)

- fat free milk

- raw apples

- extra sharp cheddar cheese

- raw carrots

- orange juice

- fat-free cottage cheese

- omega-3 eggs

- smart balance butter

- pepper

- sun dried raisins

- sun dried cranberries

- fat free yogurt

- vegetable soup (no gluten, etc)

- peppermint tea (from a tea bag with hot water)

- diet snapple/occasional diet soda

- water

- one serving Chex (caused problems)

- one serving ice cream (caused problems)

Obviously, that's not alot to choose from. I have no idea what is causing the symptoms. Maybe someone could point me in the right direction?


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



Celiac.com Sponsor (A8-M):



amahones Rookie

So far I've eliminated: gluten, xanthan gum, rice, and corn. I take a Lactaid pill when I eat dairy. I need to drink milk to take my meds else I will get ill, I also eat cheese and cottage cheese for protein.

My newest symptom: ingestion of ice cream (well, frozen yogurt) results in a severe depressive state to the point where I'm considering doing myself in and crying uncontrollably. Yes, I tried ice cream, because I found a brand that was gluten free and that was without xanthan gum.

Aside from that, my mood overall is unstable. Sometimes I'm up and sometimes I'm down. Today, I'm up. However, the fatigue is doing me in. I sleep too much, it's difficult to pry myself out of bed. My rash is back. Concentration is really difficult in class, memory problems are abudant. I'm spacey, zoning in and out a lot. I'm constantly nauseated. Periodic lightheadedness. Also, my hair is falling out, it's incredibly thin right now. I'm horrified that I'm losing my hair, not exaggerating on the word horrified either. So, somehow I'm eating something that's not agreeing with me. Can anybody tell me what it could be. These are the ONLY foods I ate for the past 2 weeks.

- prepackaged peach fruit cup (no stated gluten, xanthan gum, etc)

- fat free milk

- raw apples

- extra sharp cheddar cheese

- raw carrots

- orange juice

- fat-free cottage cheese

- omega-3 eggs

- smart balance butter

- pepper

- sun dried raisins

- sun dried cranberries

- fat free yogurt

- vegetable soup (no gluten, etc)

- peppermint tea (from a tea bag with hot water)

- diet snapple/occasional diet soda

- water

- one serving Chex (caused problems)

- one serving ice cream (caused problems)

Obviously, that's not alot to choose from. I have no idea what is causing the symptoms. Maybe someone could point me in the right direction?

I don't have any advice on what's causing the symptoms and without knowing your history, have you had your thyroid checked? For symptoms as severe as you describe, especially the suicidal thoughts/urges, I'd recommend getting yourself to a doctor ASAP.

tarnalberry Community Regular

Honestly, I'd find a replacement for the dairy (there are other sources of protein - I saw neither beans nor nuts on your list, for instance) and see if it helps. Dairy is a common culprit, and you've already identified that you've felt bad after eating a dairy item.

GottaSki Mentor

You are right. This is not alot to choose from. There is very little protein or fresh produce here. Over half of this list is dairy or processed foods.

Are you getting enough calories daily - at least 1500?

Have you been tested for specific nutrient deficiencies?

Are you taking any vitamin/mineral supplements?

Have you tried removing dairy before - maybe take meds with almond milk?

Can you eat lean meat or fish?

Diet drinks can cause some of your symptoms - switch to mostly water along with some juice and tea.

How did you end up with this list? Sure hope I'm not coming across harsh - just don't think you can get enough nutrients with this list.

flowerqueen Community Regular

I'm sorry to hear you are having a bad time of it at the moment. I agree with other comments already on here. I would definitely get your thyroid checked as those symptoms sound familiar, but it could be a nutritional issue, as the symptoms can be similar - although I'm not a doctor I'm just speaking from personal experience. I urge you to see your doctor as soon as possible as it's a complex issue and needs to be investigated thoroughly. Don't lose heart, there are a lot of us that have gone through bad times and there's always someone on here to give you advice or a friendly ear.

Good luck and let us all know how you get on.

nvsmom Community Regular

((hugs)). :( I am sorry you are having such a rough go.

I too think you should go back to the doctor and look for other things... Other autoimmune diseases especially. Hypothyroidism is one but there are others that can affect your mood energy and hair... I think the majority of AI's cause those problems.

I hope you feel better soon.

ciamarie Rookie

Great replies from the others, but I wanted to throw in my comment that when looking at your list, the one item that jumped out at me as one I had issues with; and that was smartbalance. I've gone back to real (salted) butter, and that's what I'd suggest for you too.


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



Celiac.com Sponsor (A8-M):



kwylee Apprentice

Have you considered that it may not be the lactose (milk sugar) that you are having problems with on the dairy issue, but the casein (milk protein)? I had a similar problem when I first started. I was strictly gluten free so couldn't understand why I felt so poorly - for me mostly neural disorders. I stopped ingesting dairy and then even soy and that's when I had the breakthrough amazing results.

If you're past the withdrawal stage (feeling worse before you feel better) after eliminating gluten, then you may want to consider eliminating dairy altogether for now to see if you feel any better. But I want to mention that typical butter, cheese, cottage cheese, ice cream, yogurt, sour cream, etc., contains casein. The other culprit for me turned out to be soy, which was making me just as sick as gluten and dairy. Read those labels and note that some SmartBalance contains soy. I'm no scientist, but because my symptoms were the same for gluten, dairy and soy ingestion, it would appear that my body was interpreting each of those protein molecules in the same way. From what I understand, it's very common. And if it's not found to be dairy or soy, then there are other food group intolerances that may be causing you continued trouble. But it's liberating to finally wheedle down to what it is so you can feel great everyday of your life.

Also, keep in mind that while you'll never be able to tolerate gluten, many who give up dairy (and soy) find they can reincorporate it into their diet after some months.

frieze Community Regular

So far I've eliminated: gluten, xanthan gum, rice, and corn. I take a Lactaid pill when I eat dairy. I need to drink milk to take my meds else I will get ill, I also eat cheese and cottage cheese for protein.

My newest symptom: ingestion of ice cream (well, frozen yogurt) results in a severe depressive state to the point where I'm considering doing myself in and crying uncontrollably. Yes, I tried ice cream, because I found a brand that was gluten free and that was without xanthan gum.

Aside from that, my mood overall is unstable. Sometimes I'm up and sometimes I'm down. Today, I'm up. However, the fatigue is doing me in. I sleep too much, it's difficult to pry myself out of bed. My rash is back. Concentration is really difficult in class, memory problems are abudant. I'm spacey, zoning in and out a lot. I'm constantly nauseated. Periodic lightheadedness. Also, my hair is falling out, it's incredibly thin right now. I'm horrified that I'm losing my hair, not exaggerating on the word horrified either. So, somehow I'm eating something that's not agreeing with me. Can anybody tell me what it could be. These are the ONLY foods I ate for the past 2 weeks.

- prepackaged peach fruit cup (no stated gluten, xanthan gum, etc)

- fat free milk

- raw apples

- extra sharp cheddar cheese

- raw carrots

- orange juice

- fat-free cottage cheese

- omega-3 eggs

- smart balance butter

- pepper

- sun dried raisins

- sun dried cranberries

- fat free yogurt

- vegetable soup (no gluten, etc)

- peppermint tea (from a tea bag with hot water)

- diet snapple/occasional diet soda

- water

- one serving Chex (caused problems)

- one serving ice cream (caused problems)

Obviously, that's not alot to choose from. I have no idea what is causing the symptoms. Maybe someone could point me in the right direction?

what additives are in the fat free cottage cheese and yogurt to give them the proper "mouth feel", and PLEASE can the diet soft drinks, ASAP.

shadowicewolf Proficient

Agreed be rid of the diet stuff. They often add sugar alternatives to them that aren't so good for your body.

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

      Help I’m cross contaminating myself,

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

      Help I’m cross contaminating myself,

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

      My only proof

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

      Methylprednisone treatment for inflammation?

    5. - Scott Adams replied to ElenaM's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      I think I am gluten intolerant


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,906
    • Most Online (within 30 mins)
      7,748

    Dakota4
    Newest Member
    Dakota4
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • 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.