Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

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

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

Thank you!

trayne91 Apprentice

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

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

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

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

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

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

pricklypear1971 Community Regular

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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,007
    • Most Online (within 30 mins)
      7,748

    kgoss3tt
    Newest Member
    kgoss3tt
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • aperlo34
      How are you feeling now?  I’m 2.5 Months in and feeling similar. Muscles twitching, some cramps in my muscles etc. 
    • Cindy Neshe
      I purchased food items online seeing the gluten-free symbol. No where online did it say the products were cross contamination with Gluten in their facility. Has anyone else found this with products? We need better communication to make sure people who have sensitivity issues properly notified before purchasing the item. I have actually emailed companies and asked about their statement on the product that it is gluten-free but found out their facility is not dedicated gluten-free, which means Gluten can come in contact with the gluten-free food item. I had to call, nothing listed on the product. I know that a "Dedicated gluten-free Facility" will be listed but why are these manufacturers not listing cross contamination? The answer is probably they don't want to be accountable. 
    • Brianne03
      Our daughter was recently diagnosed with Celiac. Everyone else in the family was subsequently tested. My results are the only ones I'm not confident with, despite my doctor saying they were normal. I guess I'm just looking for peace of mind because my research shows that TTG-IGA numbers greater than 10 U/mL are considered positive for Celiac and mine was 11.6 U/mL. I am happy to be wrong and not have Celiac, but need reassurance and expertise either way because my PCP said he was just going by the labs consideration of normal and wasn't sure beyond that. Could the test be indicative of other autoimmune issues, beyond Celiac, because I do have Hashimoto's?  In addition to having another autoimmune disease, I have had a chronic case of "dermatitis" in my genital/rectum area since 2020. I've seen tons of specialists, used many creams, taken pills and vitamins, have had biopsies, allergy tests (patch and skin prick), changed up all sorts of things, etc. with no real answers or solutions to make it go away. I have resorted to using a daily topical cream just to keep it at bay because otherwise I often feel like I am on fire...red, sore, bleeding, and oh so itchy!  The other thing that makes me question my results, is that I did a 23andMe genetic test years ago and it shows I have two copies of a genetic variant indicative of Celiac disease. Just looking for some clarification; thank you!! PS, I've tried figuring out how to attach screenshots of my test results, but no luck.
    • Brianne03
      Thank you for all the helpful suggestions. She has had stomach issues since the day she was born; when a baby projectile vomiting, as a big kid mostly cramping and stabbing pain after eating and just overall feeling of not feeling great...headaches, tired. We've talked to her doctor about it several times over the years; the did some testing when she was about 2 years old, prescribed a few stomach meds over the years that never helped and most recently did a simple blood test and an endoscopy to confirm and voila....answers!! Her iron and vitamin D were both super low. Wish it didn't take so long for her to get some relief, although honestly she's wishing she didn't know because she's already feeling like she's missing out because everything in our world revolves around food. She graduates this year and going to college is going to bring on a whole new level of stress...for her and me. I'm hoping by then she'll be confident in reading labels and advocating for herself and what she can and cannot eat, etc. 
    • Scott Adams
      It sounds like you’re doing an amazing job helping your daughter navigate her new gluten-free lifestyle—it can be a big adjustment, especially for little ones! To address your questions: Increased bowel movements: It’s possible her digestive system is beginning to work better now that she’s gluten-free, and she’s clearing out what wasn’t moving before. Chronic constipation and impaction can take time to resolve fully, and daily Movicol might still be helping this process. Over time, her bowels should normalize as her gut heals, but if the frequent stools persist or seem excessive, it’s worth checking with her doctor to rule out other issues like malabsorption or food intolerances. Pinkish stool color: Changes in stool color can be common after diet changes, but pinkish stools should be monitored closely. If it’s not blood and doesn’t seem to bother her, it could just be due to something she’s eaten—like certain fruits, vegetables, or food dyes. However, if the color persists, worsens, or is accompanied by other symptoms, definitely mention it to her doctor to rule out any underlying concerns. Bloated tummy: A distended tummy from celiac disease can take time to go down as her gut lining heals and inflammation reduces. It varies for every child, but improvements are often seen within a few weeks to months of being strictly gluten-free. Staying consistent with the diet and ensuring she gets all the nutrients her body needs—especially iron, zinc, and B vitamins—will support this process. If the bloating doesn’t seem to improve or worsens, her doctor may want to investigate further. It’s still early days, so keep doing what you’re doing and stay patient with her progress. Keep track of her symptoms, and don’t hesitate to bring up any concerns at her follow-up appointments. Recovery can be a slow process, but most kids with celiac thrive once their gut heals. Sending lots of positive thoughts your way—she’s lucky to have you looking out for her!
×
×
  • Create New...