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

How Long Before Feeling Better?


jeaucamom

Recommended Posts

jeaucamom Newbie

Brand spankin new to this.. yesterday was my first day entirely gluten free after getting positive results on Friday. I woke up this morning feeling WORSE than I normally do. More tired, more pain in my joints, hands swollen like balloons.. what the heck??????? Has anyone else experienced this and how long before beginning to feel better? I've heard 6 to 8 weeks... is that true??? Needing to see a little light at the end of this tunnel...


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



Celiac.com Sponsor (A8-M):



rosetapper23 Explorer

Okay, something's not right here. You're obviously having a reaction to something....and I would bet that it's something other than gluten, since you're feeling worse and you're actually having what appears to be an allergic reaction, rather than a celiac-type response. By any chance, did you eat anything processed? Oftentimes, there are ingredients in gluten-free processed foods that can give people some trouble, such as the special gums that are used or unusual grains.

In the beginning, when first following a gluten-free diet, you should eat ONLY natural foods, such as vegetables, fruits, meats, dairy (if you can tolerate it), eggs, gluten-free grains, and nuts. Many celiacs are sensitive to oats, soy, nightshade vegetables (peppers, tomatoes, potatoes, etc.), iodine, and salicylates. Please don't try to substitute gluten-free products for your usual gluten-containing processed foods while you're trying to heal your gut. I know it's hard, but you'll start feeling better a lot sooner.

Now, as far as how soon you'll start feeling better, it's different for everyone. The bloating, gas, and stomach pain went away immediately for me, but the nutritional deficiencies took at least a year to resolve. Also, the diarrhea gave way to soft stools and eventually normal stools after about 18 months on a completely restricted gluten-free diet (no cheating, no cross-contamination because I didn't go to restaurants, etc.). Give it time--you'll notice improvements gradually....and you'll celebrate each one.

I'm glad you've found the answer to your health problems....and now you just have to work on knowing how to approach a gluten-free lifestyle. Others may pop in to explain how to make your kitchen completely gluten free.

Good luck!

IrishHeart Veteran

It may take a lot longer than 6-8 weeks, hon. I do not know who told you that, but it may well be 6-18 MONTHS or longer. I started to absorb foods and nutrients about 15 months after DX.

EVERYONE HEALS at different rates. Younger people heal faster because there is less damage in the gut lining and other body systems.

Try to be patient.

Maybe this thread will help. I tried to cover most things from cross contamination to probiotics to follow up care.

Hang in there. This is a long up- and -down road at first, but you will feel better. Best wishes.

jeaucamom Newbie

Okay, something's not right here. You're obviously having a reaction to something....and I would bet that it's something other than gluten, since you're feeling worse and you're actually having what appears to be an allergic reaction, rather than a celiac-type response. By any chance, did you eat anything processed? Oftentimes, there are ingredients in gluten-free processed foods that can give people some trouble, such as the special gums that are used or unusual grains.

In the beginning, when first following a gluten-free diet, you should eat ONLY natural foods, such as vegetables, fruits, meats, dairy (if you can tolerate it), eggs, gluten-free grains, and nuts. Many celiacs are sensitive to oats, soy, nightshade vegetables (peppers, tomatoes, potatoes, etc.), iodine, and salicylates. Please don't try to substitute gluten-free products for your usual gluten-containing processed foods while you're trying to heal your gut. I know it's hard, but you'll start feeling better a lot sooner.

Now, as far as how soon you'll start feeling better, it's different for everyone. The bloating, gas, and stomach pain went away immediately for me, but the nutritional deficiencies took at least a year to resolve. Also, the diarrhea gave way to soft stools and eventually normal stools after about 18 months on a completely restricted gluten-free diet (no cheating, no cross-contamination because I didn't go to restaurants, etc.). Give it time--you'll notice improvements gradually....and you'll celebrate each one.

I'm glad you've found the answer to your health problems....and now you just have to work on knowing how to approach a gluten-free lifestyle. Others may pop in to explain how to make your kitchen completely gluten free.

Good luck!

Guilty and guilty :( I tried gluten free bread (YUCK!!) and a gluten free bar (Pamela's) from the health food store. And I did have a V8 which although gluten free I guess has the tomatoes (nightshades). UGH.... well this is going to be a learning process isn't it>??? Plus I had gluten free granola with oats and maybe I just can't tolerate the oats.... ok... back to square one. I really think it was that bar.... I had one today too and the pain in my belly is unbearable... I also had some chi tea (by Stash)... but the spices looked like whole spices so I didn't think that would be a problem. Plus my calcium is so low my hands are having severe spasms ( I also have severe hypoparathyroidism....they were removed when my thyroid was taken out from thyroid CA). I am suddenly feeling like I am afraid to put anything in my mouth!! The upside to that is I might actually lose some weight LOL... not a bad thing...\

I am definitely sticking to your advice and not having anything that is not "whole" for quite a while... and cutting out the dairy and oats too....

Desperately praying this situation improves!! Thanks so much for the input!!

jeaucamom Newbie

It may take a lot longer than 6-8 weeks, hon. I do not know who told you that, but it may well be 6-18 MONTHS or longer. I started to absorb foods and nutrients about 15 months after DX.

EVERYONE HEALS at different rates. Younger people heal faster because there is less damage in the gut lining and other body systems.

Try to be patient.

Maybe this thread will help. I tried to cover most things from cross contamination to probiotics to follow up care.

Hang in there. This is a long up- and -down road at first, but you will feel better. Best wishes.

Irishheart... yes I am definitely beginning to get the sense that it may take a LONG time.... I had chemo in 2004 and doctor accidentally gave me WAY to much because i had insisted on a new drug he had never given... boy... did that cause a lot of problems. So I have been having problems ever since... so I am 46 and have only had problems for about 8 years. I very NAIVELY thought this change of diet would be a quick fix.... Ignorance is bliss is it not :( Well,

knowledge is power. So thank you for the link I will be studying it thoroughly!!

rosetapper23 Explorer

Please don't beat yourself up too much--following a gluten-free diet is very difficult at first. Perhaps it was easier for those of us who had to adopt a gluten-free diet back when very little was available as replacements. Nowadays, there are a lot of gluten-free options, so I would imagine that anyone trying to start the diet would automatically turn to them (it makes sense!). "Back in the day," only natural food was available and perhaps a few varieties of gluten-free pasta and crackers. From the foods you mentioned, I think probably the oats and (I'm guessing) soy in the bar were responsible for you're feeling ill. You might consider continuing to eat the nightshades unless you see real evidence that you can't eat them. After a while, you can even add the dairy back in to your diet to see if you're able to tolerate it.

I'm sorry about your past experience with cancer and chemo. I had some very awful chemos five years ago...and I'm back on chemo at the moment. Yes, they can wreak havoc on one's health--that's for sure. I can't imagine being without a thyroid and parathyroids. How are you able to cope??

As for possible weight loss, I never saw any from simply going on a gluten-free diet. What DID help was not eating after 7:00 p.m. I have to take a special supplement for my cancer (one that is supposedly much more powerful than any of the chemos on the market), and it requires that I not eat four hours before bedtime. In the past four months, I've actually lost 40 pounds....and it's not because of the cancer--it's because of the adherence to the treatment schedule. Believe me--it works!

IrishHeart Veteran

Irishheart... yes I am definitely beginning to get the sense that it may take a LONG time.... I had chemo in 2004 and doctor accidentally gave me WAY to much because i had insisted on a new drug he had never given... boy... did that cause a lot of problems. So I have been having problems ever since... so I am 46 and have only had problems for about 8 years. I very NAIVELY thought this change of diet would be a quick fix.... Ignorance is bliss is it not :( Well, knowledge is power. So thank you for the link I will be studying it thoroughly!!

Oh hon, you've had quite a struggle. I'm sorry you had to endue all that. I sincerely hope you begin to improve soon. But, it could be a month or so to start to see improvement. I do know how hard it is --and I wish there were a "fast forward button for us all" so we could be feeling 100% a lot sooner.

Your gut may need some replenishing of beneficila bacteria. Can you take probiotics?

And as ROSETAPPER suggests, clean, whole fresh foods are your best bet. If you wish to have some certified G F bread or a treat, just try 1 at a time, so you can see what you feel like eating them.

I wish you all the best.


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



Celiac.com Sponsor (A8-M):



jeaucamom Newbie

So... didn't think it was possible to feel any worse.. but I was mistaken. Since yesterday afternoon and all through the night I've had horrendous stomach pain/spasms, horrible diarrhea and vomiting...

Any chance this is detox or more likely coincidental illness? Very confused and feeling like I need to go to broth for a week or so and then reintroduce slowly.

Do people experience detox when going gluten free? How soon would it happen and what would it look like?

rosetapper23 Explorer

You know, there are a number of stomach illnesses going around right now....and from your description, I'm guessing that you might just have one of them. Some people DO feel that they go through a gluten withdrawal (I personally believe it is probably a carb withdrawal), but any such withdrawal would not include such severe symptoms.

Rest, drink water, and eat lightly until you feel better. Bananas are good for these types of things.

Feel better, my friend!

nvsmom Community Regular

Unless those are symptoms you get when you eat gluten normally, I would guess it's a flu... bad timing for you! (hugs) I hope it passes quickly and you feel better soon.

I was one who went through some sort of withdrawl for the first two weeks. I was so cranky and tired but it passed before my family disowned me. :)

Oh, I was also one who lost weight initially... but without the flu symptoms. :( Best wishes!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,751
    • Most Online (within 30 mins)
      7,748

    Rosemary Dunn
    Newest Member
    Rosemary Dunn
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • lmemsm
      With that many foods removed from your diet, what do you eat?  I also have histamine issues and migraines so that takes out certain trigger foods and high histamine vegetables.  Have allergies to coconut and issues with nuts so those are out.  I'm beginning to think I may have to remove dairy and some of the grains beyond wheat to get allergies under control.  Just having so many issues figuring out what to make at meal times.  What's a typical breakfast look like for you?  Thanks.
    • knitty kitty
      @Healthforme, No prescription needed for thiamine hydrochloride, Benfotiamine, and TTFD (Tetrahydrofurfuryl Disulfide).  They are available over the counter.   Thiamine Mononitrate is not recommended because the body doesn't absorb or utilize it well.  
    • knitty kitty
      @Zuma888,  I'm so happy you're feeling better!   Thanks for letting us know of your improvement!
    • RMJ
      HLA-DQ2 is NOT a continuum 2.01 to 2.99, but I don’t understand HLA genetics well enough to explain it further.  It is not just one gene that is either this or that.
    • trents
      Okay, I'm taking a guess here. We are used to hearing in layman terms that having either the HLA-DQ2 or the HLA-DQ8 gene, either heterozygous or homozygous, presents the possibility of developing active celiac disease. So, I'm guessing that the HLA-DQ2 gene is actually a range of variants (2.01-2.99) with HLA-DQ 2.5 being in the centerpiece of the range. I'm also guessing that "permissive" is equivalent to "possessing the possibility" to develop active celiac disease and does not address the issue of hetero vs. homozygus per se. But the fact that 2.01,2.01 is a couplet may indicated homozygousity? All wild guesses.
×
×
  • Create New...