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

Question On What To Expect Going Gluten Free

trayne91

Recommended Posts

trayne91 Apprentice
trayne91
Posted

Hello all. Was wondering what to expect going gluten free right away. I've been gluten free about a week and can say I don't feel as tired as I did just a week ago. However, today about lunch time, I all of the sudden felt tired. Right now I literally feel exhausted and my legs tingle. I don't know if I can expect to feel periods of highs and lows until healed or on diet a while or if I might have accidentally glutened myself, maybe?

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

The next 6 months will be a roller coaster. One thing you need to watch is accidentally starving yourself because you don't have "safe" food near or with you. Learn to carry something with you at all times.

Everyone's journey is different. But generally, the first 6 months is up and down - don't panic unless you start to see a pattern.

Aaaaannnnddd....you are probably hitting withdrawal-which is exactly what you think it is. A suckey time when you are weaning off gluten and your body is resetting (the first of many times, probably).

Exhaustion is normal. Rest as much as you can.

trayne91 Apprentice
trayne91
Posted
  • Author

Thank you!

trayne91 Apprentice
trayne91
Posted
  • Author

Well, I fell asleep, almost - was that exhausted at seven! But now wide awake, although tired, super gasy, nauseated, stomach aches, and it won't quit making noises. The night isn't getting any better, and i guess the days will not, either. Thank you so much the head's up. I can, with certainty, say this stinks! :(

pricklypear1971 Community Regular
pricklypear1971
Posted

Oooh. Not good.

Well, if you are gassy you may try digestive enzymes with meals. That will help you digest your food better. I like Enzymedica products.

Probiotics help, too.

Screen all supplaments for gluten!!!!

Are you eating milk products? You may consider dropping those for a while. Healing Celiacs can have trouble digesting milk temporarily or permanently while the villi heal.

Insomnia is unfortunately, normal, during healing. Sometimes it's a vitamin deficiency and sometimes it's a phase. Search this board for hints to help.

If your doctor didn't check your vitamin levels get that done - D's, b's, irons, cal/mag, k. Vitamin deficiencies can really affect your healing.

Hope you get some relief soon!

Tree03 Rookie
Tree03
Posted

Hang in there....everyone is different. I agree that it is like a roller coaster. There is a ton of info here and I'm learning a lot from everyone!

For me, the first month was the worst. I had really bad withdrawal headaches, moodiness, joint pains, tummy gurgling...it's like all the symptoms hit at once and bad too! It's only been a few months of gluten-free for me but I have already noticed some difference. I know it does take a while sometimes but with already noticing a difference I am hopeful :)

Good luck and hope you feel better quick!

trayne91 Apprentice
trayne91
Posted
  • Author

Thank you! I was up til 230am. Yuk! I didn't have vitamins checked. My dr. Told me nothing and didn't schedule me an appt. The nurse gave me my results and told me to continue my gluten free diet, I told her I wasn't even on one. I was pretty much on my own. I know I have low vitamin d. I've been struggling with that for years. I can ask to get a panel of them done. I am eating dairy. I swear my favorite ice cream is getting me through. :D

I take 1000iu vit d a day. I take a probiotic I have checked them and they are both gluten free. I feel better today. I guess I will keep watch and know each day will be a learning process.

It must take years to know what u can eat, what you can't, and how you know,if you are sick, tired, or accidentally glutened. Seems like I'll never learn it all and I'm going to have to hurt in the process of figuring it all out. No fun.

You all are the best. Thanks so much for all your help and advice.

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

Celiac.com Sponsor (A8-M):


pricklypear1971 Community Regular
pricklypear1971
Posted

Thank you! I was up til 230am. Yuk! I didn't have vitamins checked. My dr. Told me nothing and didn't schedule me an appt. The nurse gave me my results and told me to continue my gluten free diet, I told her I wasn't even on one. I was pretty much on my own. I know I have low vitamin d. I've been struggling with that for years. I can ask to get a panel of them done. I am eating dairy. I swear my favorite ice cream is getting me through. :D

I take 1000iu vit d a day. I take a probiotic I have checked them and they are both gluten free. I feel better today. I guess I will keep watch and know each day will be a learning process.

It must take years to know what u can eat, what you can't, and how you know,if you are sick, tired, or accidentally glutened. Seems like I'll never learn it all and I'm going to have to hurt in the process of figuring it all out. No fun.

You all are the best. Thanks so much for all your help and advice.

I understand about the ice cream. I was addicted to Talenti Gelato. Still am if I let myself buy it. It's like crack.

Yes, you need your levels checked. Especially since you're already so low on d. Did they check your thyroid?

trayne91 Apprentice
trayne91
Posted
  • Author

Yep. Thyroid was fine. Checked it for what seems like 100 times. :)

pricklypear1971 Community Regular
pricklypear1971
Posted

Yep. Thyroid was fine. Checked it for what seems like 100 times. :)

Do you have a copy of the results ? Was it 3 or less?

trayne91 Apprentice
trayne91
Posted
  • Author

I see a thyroid stimulating hormone that has run 0.9 to 1.7 the last 3 times checked.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

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

      Help I’m cross contaminating myself,

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

      Help I’m cross contaminating myself,

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

      My only proof

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

      Methylprednisone treatment for inflammation?

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

      I think I am gluten intolerant

      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 p...
  • 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
      Help I’m cross contaminating myself,

      By klmgarland · Posted

      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
      Help I’m cross contaminating myself,

      By Scott Adams · Posted

      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
      My only proof

      By Scott Adams · Posted

      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
      Methylprednisone treatment for inflammation?

      By Scott Adams · Posted

      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
      I think I am gluten intolerant

      By Scott Adams · Posted

      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.