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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    2. - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

    3. - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

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

    • Total Members
      132,923
    • Most Online (within 30 mins)
      7,748

    cmckurtz
    Newest Member
    cmckurtz
    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

    • cristiana
      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      very interesting thanks for the info  
    • Florence Lillian
      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • 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.