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- Recovery And Healing?


Milkweedmouth

Recommended Posts

Milkweedmouth Newbie

Hi all! I just got a positive biopsy for Celiac and have been suffering through several weeks of up and downs. The first two weeks off of gluten I progressively felt better, but, after getting accidentally glutened at a trip to the grandmother's I have felt worse and worse for almost two weeks now. Suspect culprit is sausage from gluten free pizza (so happy to have pizza I got careless!) Severe constipation, bloating nausea, fatigue, stomach pains and weird flu like symptoms. Every day is a trial, seriously. I've been extremely dilligint in making sure everything I consume in gluten free since then. I'm just wondering if anyone could offer some advice in terms of recovery and whether I should be concerned about the severity and/or length of the symptoms, and potentially share personal experiences? I feel entirely debilitated and have been offered absolutely no support from my doctor. (last words were "eat a gluten free diet") Any advice in terms of dietary and herbal remedies is greatly appreciated!


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



Celiac.com Sponsor (A8-M):



rosetapper23 Explorer

L-Glutamine is a good supplement for helping to heal your gut. If you're like many of us who have celiac, you'll become more sensitive to gluten the longer you abstain from it. Of course, that's no reason to stop eating gluten free--it's just something you'll probably notice when you accidentally get glutened in the future. Also, although you believe you're truly eating gluten free, you may be getting some inadvertent gluten in your diet. Remember, soy sauce and beer both have gluten, as do some supplements and medications. Frozen french fries and hash browns have sometimes been cut with flour to keep them from sticking during the freezing process. Some seasonings also contain gluten. When you first start to go gluten free, it's best to stick with only natural foods--nothing processed. I know that you'll miss pizza (believe me, we all missed pizza....and, lucky you, now there are gluten-free pizza options, which was not the case only a few years ago). Stick to meats, dairy, nuts, vegetables, fruits, rice, and corn for a while, and your symptoms should begin to abate. If not, then you probably have an allergy or sensitivity to another food.

Good luck! We all know how difficult it is to make the adjustment to a gluten-free diet, but believe me--some day you won't even want to eat gluten anymore. You'll crave real foods, not processed junk. It took me about two years to get to that point--until then, I was pretty bitter. The grieving process just takes a while....then all is good again. I promise....

ravenwoodglass Mentor

Most of us have some ups and downs in the healing process. How long before you feel better all the time varies for different folks.

It is a good idea to avoid dairy until you have healed as the part of your intestine that is damaged by celiac is the same part that produces the enzyme that helps us digest dairy. So it may not have been the sausage it may have been the cheese. Go with a whole unprocessed diet for a bit until you have healed and make sure you have done what you need to do to prevent cross contamination in your home like a new dedicated toaster, replacing scratched pots and pans and not cooking with wheat flour for others.

It is not unusual for us to become more sensitive to small amounts of gluten after we go gluten free. It is a pain, literally, but it is your body trying to protect you.

SGWhiskers Collaborator

I hope you recover from this glutening quickly. Keep reading up on all the possible sources of cross contamination and take them seriously. I didn't find a consistent pattern of recovery until I got super strict about the cross contamination. It takes me 2 weeks to do the bulk of my recovering from a glutening and probably 5 to be back to normal. Getting good at the gluten-free diet is a learning process. We all make mistakes and those become less frequent as we go on. It is great that you started to see a difference right away though.

Lots of us feel best with a meat/potatoes/veggies/fruit/eggs diet for 3 months and then add back gluten free mixes, breads, and cereals along with a trial of dairy. Dairy gives many of us issues for a long time.

I'm sure you heard it before, but look into your pots, pans, utensils, can openers, personal hygine products, and grill. Avoid eating out or food others cook for you until you have mastered keeping yourself healthy. The stricter you get, the better you will feel. Give it time and keep hydrated and well rested. I love flax seeds to move the gluten meal out of the GI track asap. I also rely on tylenol to get me through the worst few days of gluten pain. Tylenol PM helps me through the nights and weekends although I wind up just sleeping the pain away.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,208
    • Most Online (within 30 mins)
      7,748

    Gail Brown
    Newest Member
    Gail Brown
    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

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  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.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.