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

Newly Diagnosed- How Long Did You Take To Feel Better?


KristinIrwin

Recommended Posts

KristinIrwin Apprentice

Okay so I'm newly diagnosed (a few weeks ago). I've only been truly gluten free for just under a month, so I know I am still healing and need to be patient. I'm still having abdominal pain occasionally and my BM definitely aren't normal by any means. I still have weird symptoms (cramps, gas, discomfort) and keep getting worried that something else is going on, even though I've tested negative for basically everything else.

How long did it take for you guys to have your digestive system back to normal? I know one month is not long at all, but I was wondering how long it took you guys to return to normal and if you had bumps in the road like I have.

Thanks!

Kristin


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Since I presented only with Hashimoto's and anemia, my abdominal symptoms (evolving from eating gluten like a madwoman between the blood test (mild) to endo (moderate to severe)) went away at seven weeks.  I noticed that I still have problems with harder-to-digest foods (e.g. broccoli), but that will resolve with time.  It may take up to a year for my anemia and thyroid to balance out (wasn't absorbing my thyroid meds properly).  I'm beefing up on supplements, including iron, and concentrating on healing. I still have to avoid those foods that I have been allergic/intolerant  to for many years (e.g. almonds, cow's milk proteins, eggs, garlic and mushrooms).  

 

And yes, I have been glutened twice when eating out, but the set-back has been brief (a few days).  

 

My husband has been gluten-free for 12 years, so it's been a relatively easy transition for me.

1desperateladysaved Proficient

I am coming from a super-sensitive viewpoint.  Hopefully, you were not as sick for as long.  I had 30 + years of undeniable symptoms.  The hindsight is good.  I felt better after  4 days, but lapsed into 2 or so months of withdrawal symptoms.  At that point I cut out all grains and began another 3 months of withdrawal.    I would focus on doing all you can to improve your health and expect improvement someday. '

 

Here are some questions to ask yourself:

 

Do I know and apply all I should about the gluten free diet?  If no, learn more.

Do I have other problems such as absorption, food digestion problems, or  other diseases that are causing trouble?  You have worked on some of this with your doctors, so you are progressing.  This may need time and much thinking about to determine.

Am I having issues with super-sensitivity, or cross contamination?

 

I didn't really have a clear mind until I :

Cut out sweets

Used natural organic foods

Spent time in the sunshine

Took supplements

Did a rotational diet

Hopefully, you won't need all of these means, but if you do, you know they are out there along with many others if you need them.

 

Don't give up.  You have taken one gluten free step, so now keep walking.  I did have higher highs as I progressed gluten free.  They became more frequent.  Oftentimes my lowest lows were followed by my highest highs.  As long as you keep walking forward, you can expect the tides to turn for you!

 

Get Well soon,

 

Diana

pricklypear1971 Community Regular

At least 9 months before bm's approached predictable. A year and a half until I was comfortable they were "new normal".

KristinIrwin Apprentice

Thanks everyone. This disease is just such a bummer!

Did you guys have a lot of absorption and food digestion issues too?

gatita Enthusiast

Did you guys have a lot of absorption and food digestion issues too?

 

 

Yep, that's me! Ten months in, I still have occasional squirrelly gut issues, like this morning. But they are short-lived and not really a problem.

 

I felt a LOT better after about 8 months. Now it's only bad when I'm accidentally glutened.

notme Experienced

everybody is different - i felt better almost immediately, but i felt like 8 wks was noticeable.  i started gaining weight again.  i was overjoyed to have 'cheeks!' again, like when i smiled i could see my cheeks.  i was like a skeleton, though.  at nearly 3 years gluten-free, i feel like i am still healing.  all the time i am having little milestones  (carrying TWO things down the stairs!  driving at NIGHT in the RAIN!  playing KICKBALL! lolz)  i still have trouble right around the time my period comes, lolz, i start thinking uh-oh i got glutened.  but then i check my calendar and eat chocolate haha because it's just Unhappy Unfather's Day ;)


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



Celiac.com Sponsor (A8-M):



  • 2 weeks later...
bololgreen Newbie

I was diagnosed at the end of March.  One week later I noticed an increase in my energy level.  I was underweight...93 lbs and dropping.  Eight weeks out...I was a different person.  I had gained nine pounds and was eating like crazy.  To date, I have gained 12 lbs and still need to put on another five. The doctor and dietician say I'm still recovering but I feel 100% better. 

Archived

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

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,807
    • Most Online (within 30 mins)
      7,748

    CeceNV
    Newest Member
    CeceNV
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      The anti-endomysial antibody test is an old test that is generally reported as positive or negative - a lab technician looks down a microscope to check for fluorescence of the sample. It is less sensitive but more specific for coeliac disease than IgA tTG2. Hence, it is not "barely positive" - it is positive. People diagnosed in childhood recover much more quickly than adults.  I would look at testing all 1st degree relatives - parents, siblings.
    • xxnonamexx
      What about digestive enzymes that I hear help? I take align 5x probiotics daily.
    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
    • Wheatwacked
      My son was diagnosed when he was weaned in 1976 after several endoscopies.  Given your two year old's symptoms and your family history and your pediatrition advocating for the dx, I would agree.  Whether an endoscopy is positive or negative is irrelevant.   That may happen even with endoscopy.  Pick your doctors with that in mind. In the end you save the potential trauma of the endoscopy for your baby.   Mine also had really nasty poop.  His doctor started him on Nutramigen Infant because at the time it was the only product that was hypo allergenic and had complete nutrition. The improvement was immediate.
    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
×
×
  • 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.