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

My Stages Of Healing: 5.5 Months Gluten Free


HopefulMama23

Recommended Posts

HopefulMama23 Explorer

I have been gluten free since January of this year, so about 5.5 months. I have gone through what I think are the strangest "phases" of healing since the day I stopped eating gluten. I'm wondering if any of this at all is normal?

Here's the rundown, I will try to not ramble:

Gave up gluten in January- felt GREAT. I had been depressed, anxious, had constant D, lost weight, no appetite, lost hair (lots), dry skin, sore teeth, and bad nails. All of that started to get better within a week of changing my diet. I should say that I gave up gluten, dairy, soy, caffiene and alcohol for those first few weeks.

After one month gluten-free- I got TIRED. Very, very tired. I would go to sleep with my kids at 8:00 PM and sleep until 7:00 AM, most nights. And I could have slept more. Still off dairy and gluten and caffiene. Have added back occasional soy and occasional alcohol.

After 2-3 months: Felt good. Started to gain weight and became VERY bloated- I actually took a few different pregnancy tests becuase I looked 4 months pregnant. Added dairy back in.

After 4 months to present: Started to not be able to sleep. Not just an occasional night, but EVERY night, I was up for hours at a time. Anxiety came back with a vengence, along with hair loss. I cut soy and dairy back out in an attempt to remedy this, but so far it has not helped.

So, my phases since coming off gluten look like this: the initial high of coming off gluten, then the tired month, then the bloated month, and now the hyper month. Is ANY of that at all "normal"?

I will say I still think I'm in a better place than I was 5 months ago, when my doctors and I decided I needed to stay off gluten. But I am very, very discouraged that things have not stabalized, and that I am not just OK yet. I hate constantly evaluating my body, my physical health, and my mental health. I feel like an old lady in the nursing home who just talks about her symptoms and aches and pains all day. I just want to feel normal again.


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



Celiac.com Sponsor (A8-M):



Marilyn R Community Regular

Possibly you've devloped another food intolerance ... nightshades? corn? fructose? legumes?

What are you eating and drinking. Maybe someone can help pinpoint the culprit.

Do you keep a food diary?

Good luck!

viviendoparajesus Apprentice

i think there are definitely individual differences but there do seem to be different phases.

i had the bloated phase before i went off gluten. i still have some bloating but nothing like before when it made me look pregnant.

i have been tired before and after gluten-free. i started sleeping better since gluten-free. though something about the spring and summertime disrupts my sleep.

i felt great when i first went off gluten. my skin cleared up, my sleep was better, i was not constipated, my warts went away.

i was hyper before i went off gluten and until my body started to stabilize and heal some.

i have been off gluten for a year and am still trying to heal and identify problem foods so i can avoid them and heal.

soy, dairy, caffeine, and alcohol can cause problems for some people so that may be having a role in your healing process.

i can relate to the pain of tracking deit and symptoms. however, my hope is that after healing it will not take as much effort.

rgarton Contributor

Aha i found someone who has been gluten free as long as i have :) I didn't find any changes until month 4 then cut off soya and voila started to feel better but not 100%, but my anxiety and depression went away which was nice! But i wasn't still 100% so i started noticing things like my hair conditioner i suddenly started reacting too, I've now cahnged all my Shampoo and Conditoner, body wash make up etc etc and felt MUCH better, then ran out of conditioner used the old one and got anxiety back, aching all over, sore eyes, and loose, mucusey bm's (TMI!) the only thing i could think of was using my old conditioner for 2 days, i also noticed tiny blisters on my head! Seemed so silly! But little things like that seem to hurt me more than ever now, and im guessing it is the healing process. So maybe check all these things also? Hugs to you!

FooGirlsMom Rookie

Hi there,

I've had ups and downs but overall my health is going up...and as far as I know, I have not be "glutened" since starting the diet back in October of last year.

One thing that might encourage you is that I experienced a bit of what you have. The initial "high" as you called it from going off gluten - yep - experienced that. I think what happened is that once all those antibodies quit swirling around, I felt better, but then I suddenly noticed other things I was reacting to. I had to give up soy, corn and dairy for awhile. I have been able to add dairy and corn back in (my intenstines must have healed enough) but not soy. In fact, I discovered that soybean oil made my joints swell like crazy. One afternoon I forgot about the soy and ate some Best Foods Mayo (first ingredient soybean oil) and the joints in my hands flared. My right hand, within an hour was so painful I couldn't close it past a claw without excruciating pain. It took a week to completely clear up. I am ok with soy lecithin but not soy or soy oils. I think they are out forever. I didn't realize I had an allergy to it until I went gluten-free. Go figure.

I have had waves of fatigue. The healing process takes time. I do notice that I feel the best when I eat a primarily whole foods, low carb diet. It's probably because my pancreas has taken a hit over the years. I was in pretty bad shape in October before going gluten-free. If I stick to meat, green veggies, a little fruit, and not too many potatoes, eggs, etc. I feel best.

If you are really at your wits end and feel awful, the elimination diet might help you. Then you can discover if you are reacting to some of the top allergen foods- soy, eggs, dairy, nuts, etc.

Hang in there. Feeling awful is information that you need to follow up on. If you're not deficience in vitamins, I'd start looking to food sensitivities.

FooGirlsMom

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. - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??

    2. - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    3. - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

    4. - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      2

      Gluten related ??


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,076
    • Most Online (within 30 mins)
      7,748

    Deb baker
    Newest Member
    Deb baker
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Colleen H
      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
×
×
  • 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.