Jump to content
  • 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):

Recovery


Ash82

Recommended Posts

Ash82 Rookie

I have been recently diagnosed with celiac disease about 3 weeks ago. I have tried really hard to maintain a gluten free diet. I was just wondering how long it takes to start seeing improvements with your GI symptoms (diarrhea, etc.) I seemed to get better for a week or so, and then would start having problems again, not all the time but enough to be annoying. Is this normal during the recovery process, or should it cause concern for other problems (lactose intolerance, refractory celiac). I am 23 and had been diagnosed with IBS about a year ago. My blood levels were definatly positive, but not on the high end. I was just wondering if anyone can relate or has any suggestions. Thank you.


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



Celiac.com Sponsor (A8-M):



CarlaB Enthusiast

I have good days and bad days. It's getting so that my bad days now are better than my good days used to be -- this is if I haven't been glutened. Some days I'm just tired and a little foggy. I've been off casein for three weeks now and am doing much better -- been off gluten for six months. Give it some time. It took years for this damage to take place, it will take a while till you're completely better. Be patient with it. If you are like I am, you are expecting it to all be okay too quickly!! ;)

BRUMI1968 Collaborator

I have always had C rather than D. When I went gluten free, I had C for three weeks maybe. I did figure out I had hidden gluten in my diet - cross contamination on some pumpkin seeds, the mayo I was using, that sort of thing. I did carefully segregate my kitchen into gluten side, not gluten side - got my own toaster and cutting board, have my own silverware drawer (didn't want crumbs falling into it) - that kind of thing.

My C has diminished a bit, but I still have bloat. My other symptoms have gone away though, canker sores, itching, and apparently, more brain fog than I thought I had (now that I don't, I can see how bad it was).

Anyway, keep at it. Make sure you're not getting glutened. And I agree about the dairy - it makes sense to quit dairy at least temporarily as lactase is made on the villi, and if you have damaged villi, you're not making the required stuff to digest dairy. (Never mind the casein, which is used an industrial glue - there isn't anything we make that allows us to 'digest' that.)

Take care.

jerseyangel Proficient

Hi and welcome to the board! :)

It's very common for healing to be uneven at the beginning. This is the point where we're becoming familiar with the diet, making sure our kitchens are gluten-free, and going through our personal care products, meds and vitamins. Sometimes the problem is getting some gluten by mistake--happens to everyone at first! Also, the healing process itself takes time--how much is individual. Depends on a number of things--how long you were sick, your general health and possibly other food intolerance. It's a good idea to avoid dairy products at first--as Bully4You explained. The first several months for me were difficult--

Good luck with everything--just keep up the good work, and it should all fall into place :D

Ash82 Rookie

Thanks for the advice, I feel a bit better now. I think I am going to cut dairy from my diet for a few days and see what happens. Im also going to look for hidden gluten. Did anyone try those lactose pills?? I was wondering if they worked and if I should bother trying them.

CarlaB Enthusiast
Thanks for the advice, I feel a bit better now. I think I am going to cut dairy from my diet for a few days and see what happens. Im also going to look for hidden gluten. Did anyone try those lactose pills?? I was wondering if they worked and if I should bother trying them.

Some celiacs have a lactose intolerance and the lactose pills help. Mine is a casein intolerance, which is the protein in millk, so there's nothing to take for it.

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. - knitty kitty replied to Mihai's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      33

      Pain in the right side of abdomen

    2. - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      1 Year Elimination Diet journey

    3. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      1 Year Elimination Diet journey

    4. - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      1 Year Elimination Diet journey

    5. - Aretaeus Cappadocia replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      1 Year Elimination Diet journey

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

    • Total Members
      134,052
    • Most Online (within 30 mins)
      10,442

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

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Heatherisle, I would feel much less worried if you would insist that the doctors administer high dose thiamine hydrochloride (500mg x 3 daily) for several days, with a banana bag (all eight B vitamins, riboflavin makes it yellow like bananas).  Electrolytes may become unbalanced, so monitoring is needed as well.  Just to rule out Thiamine deficiency, high dose thiamine should be administered for several days.  If no health improvement, look for something else. The symptoms your daughter is showing are seen in Wernickes Encephalopathy caused by Thiamine deficiency.  White spots in the brain including on the frontal lobe are seen in Wernickes Encephalopathy.  Blurred vision, balance problems, changed gait (wider stance to compensate for imbalance), tingling in hands and feet, ascending neuropathy, lower back pain, kidney pain, abdominal pain are all symptoms I have experienced when I had Wernickes.  The damage becomes permanent if not corrected quickly.  Korsakoff Syndrome follows with brain damage that cannot be reversed, and death following.   Doctors are not trained in Nutrition.  Doctors are taught Wernickes Encephalopathy only happens in Alcoholism.  My doctors did not recognize Wernickes Encephalopathy because I did not drink alcohol.  If it walks like a duck... Doctors do not realize that Malabsorption from Celiac Disease can result in severe nutritional deficiency diseases, including Wernickes.  Malabsorption of Celiac Disease affects all the essential nutrients, vitamins and minerals, our bodies need to function properly.  It's rare to have a deficiency in just one vitamin.  B12 Deficiency and Thiamine deficiency go hand in hand.   I had symptoms of deficiencies in many vitamins and minerals because my Celiac Disease was still undiagnosed at that time.  They laughed when I asked to be checked for Celiac Disease.  I was overweight (high calorie malnutrition).  I didn't match their " in the box" thinking.  I didn't match their concept of the wasting away, skin and bones stereotype of Celiac Disease.  My doctors wrote me off as "depressed".  I could feel myself dying.  I trusted what I learned at university about how vitamins work inside the body.  I recognized the symptoms of Wernickes and other nutritional deficiency diseases.  At home, I took 500 mg over the counter thiamine hydrochloride and had health improvement within twenty minutes.  I continued supplementing for months, with thiamine and B vitamins and electrolytes.  I continued to have health improvements.  I did suffer some permanent brain damage.  I have permanent vision problems and optic nerve damage.  Computer screens cause migraines.  I struggle through them to help others.   Ask for Thiamine and an Erythrocyte Transketolace Activity Assay.  This test is more accurate than a blood test for Thiamine level, but both tests take time, during which time permanent damage can be done.  The World Health Organization recommends thiamine administration before test results come back in order to prevent permanent damage.   Trying thiamine hydrochloride is simple and cheap and safe and nontoxic.  If high dose thiamine doesn't work, there's no harm done.  Try thiamine supplementation if only to rule out Thiamine deficiency....while there's still time. References: Thiamine Deficiency and Brain Injury: Neuroanatomical Changes in the Wernicke-Korsakoff Syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC12535404/ Concomitant Vitamin B1 and Vitamin B12 Deficiency Mimicking Thrombotic Thrombocytopenic Purpura https://pmc.ncbi.nlm.nih.gov/articles/PMC9887457/ Please have ears to hear.
    • Aretaeus Cappadocia
      I don't know about this. Here's how I make kasha: boil water in a pot add the kasha, stir to mix, turn heat down to a gentle simmer for ~10 min, maybe 15, until tender remove from heat and serve There are lots of variations if you wish, like adding salt and butter. One variation that is really tasty, but kind of a pain, is to mix the dry kasha with a beaten raw egg, heat the dry kasha/egg mixture in the pot for a couple of minutes (to coat the kasha and cook the egg), then add boiling water and finish like the "basic" recipe above. I seldom have the patience to do all of that, though.
    • xxnonamexx
      What's the reasoning of washing and rinsing kasha buckwheat for 12 hrs
    • Aretaeus Cappadocia
      I don't clean the kasha. It does take more than a minute but less than half an hour. However I understand the need for efficiency in the morning routine. I am not familiar with the lemon thing. Another one to consider is quinoa (I buy Kirkland, labeled gluten free). It is probably better to rinse the quinoa before cooking. I don't notice it myself but a lot of people don't like unwashed quinoa because of saponins that are removed by a rinse. All of these are reheatable if you want to make a larger amount ahead of time. Also, it may be possible to use the "overnight oats" strategy with some or all of these, but I have to say I never even thought about it until writing this response.
    • Aretaeus Cappadocia
      I like the Wolff's brand coarse kasha in the grocery store, but I also like the Azure Standard products (AzureStandard.com) for buckwheat, amaranth and other ingredients. The Wolff's package in my pantry is labeled "gluten free". Azure says that their packaging plant has an allergen control program but almost none of their products are labeled gluten free. I have been relying on Azure a lot for my gluten-free diet and the global outcome has been good but I never know for sure for any given product. I eat something I bought from them pretty much every day. (wish I could tell you something more definitive) Full transparency: I was diagnosed with celiac by antibody test (10x the threshold) and by biopsy, and now my antibody levels are 1/10 of the threshold, so my diet appears to be very gluten safe. However, I never had any clear acute symptoms so I never know for sure when I'm consuming gluten.
×
×
  • Create New...