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

I Can't Figure It Out!


nonnarae

Recommended Posts

nonnarae Rookie

I have been glute free for a very short time. Only about 2 months now, but I am so careful at home. I was feeling better (at least my leg cramps,bloating, constant migraine had been going away). Then we went on vacation. I was gluten ed and I have not been able to feel better since!

I know my house is gluten-free. nothing is allowed in, but I constantly feel gluten ed and the leg pain is AWEFUL.

I have no idea where to start looking for gluten. Uggghh I hate feeling this way.


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



Celiac.com Sponsor (A8-M):



bartfull Rising Star

It's a shame that you got glutened on vacation but this setback might well have happened anyway. Many many many of us go through a "honeymoon period" when we first start the diet. We start feeling GREAT. And then a couple of months later we start feeling lousy again. It happened to me.

 

It took a long time to get the damage and it will take a long time to get rid of it. Just be careful with your diet. If you haven't given up dairy it might be a good idea to do so for about six months or so. Try sticking to whole foods (organic if possible) and avoid processed foods. Give it some time.

notme Experienced

blah, i messed up on vacation, too.  i wasn't as careful as i should have been, even though i planned and packed food, i broke my own rules (2 of 'em   :ph34r: )  now, i'm having a pretty sharp reminder why i made the rules in the first place!!   :angry: (plus, i'm having to listen to the husband tell me 'i told you so", so, adding insult to injury. he's had years of practice, lolz)  nah, he's really very understanding about it.  and patient with me because it will be another 10 days or so before i'm back to 'good' - wah, i should stop whining - i did it to myself... <_< 

 

so, it might take some time for you to recover even without re-glutening yourself.  just inflammation that hates every food.  barty is right, give it time, eat 'clean'  - have you tried a food journal?  helped me figure out what not to eat in the beginning.  stuff might bother you now that you may be able to add back into your diet once you heal up some.  good luck and hope you feel better :)

  • 4 weeks later...
nonnarae Rookie

thank you both for your comments. I have decided I will not eat anywhere that is not 100 percent gluten free. Each time I have tried (with the exception of the sushi place in town) I have been seriously glutned. I can not believe how violent my reactions seem to be getting. If I eat at home I am fine, eat at the sushi place fine, anywhere else and within an hour I have major migraines, vomiting, swelling and then days of abdominal pain and aching everywhere it seems.  

 

 

I have to just come to terms with the fact that I CANNOT eat out. I just seem to be to sensitive, --sighs--

 

positive note is that I have learned to make soooo many things I liked to eat out. mmhmmm I figured out Chinese. all will be well.

jiggles Apprentice

Hi nonnarae

Have you cut out oats and dairy whilst you are still healing , as they can make you feel awful, just like being glutened as lots of new coeliacs can't really digest them until they have healed more ,

  • 3 weeks later...
nonnarae Rookie

jiggles,'

 

 

I am considering cutting out dairy completely. I did replace most of my dairy with almond milk, but have not been looking at the ingredients in products. I might just have to go all out and do the whole foods only and add things in slowly later. 

  • 2 weeks later...
Loretta trying Newbie

Since going gluten free on August 1st, I have found that I am reacting to all nightshades, sweet potatoes, beans, cabbage, etc. I also can not eat my vegetables and fruit raw. None of this stuff bothered me before I damaged my intestines. I am hoping to add some of these things back when I heal. I'm trying to do the four day food rotation so I don't start reacting to anything else.

Hard to come up with tasty and interesting food.....(sigh!!!)

 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Since going gluten free on August 1st, I have found that I am reacting to all nightshades, sweet potatoes, beans, cabbage, etc. I also can not eat my vegetables and fruit raw. None of this stuff bothered me before I damaged my intestines. I am hoping to add some of these things back when I heal. I'm trying to do the four day food rotation so I don't start reacting to anything else.

Hard to come up with tasty and interesting food.....(sigh!!!)

 

Soon, you'll be able to add so many foods back in!  After my recently glutening, it took two months to heal.  I could not digest  raw veggies either!  I consumed a lot of fish and stewed meat and well-cooked veggies.  Boring, but easy to digest! 

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. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      9

      My only proof

    2. - knitty kitty replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    3. - Trish G replied to Trish G's topic in Gluten-Free Foods, Products, Shopping & Medications
      10

      Fiber Supplement

    4. - trents replied to Hmart's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      13

      Is this celiac?

    5. - trents replied to kpf's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      15

      ttg iga high (646 mg/dl) other results are normal


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,352
    • Most Online (within 30 mins)
      7,748

    Teagan
    Newest Member
    Teagan
    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

    • NanceK
      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      @Hmart, The reason why your intestinal damage was so severe, yet your tTg IgA was so minimal can be due to cutting back on gluten (and food in general) due to worsening symptoms.  The tTg IgA antibodies are made in the intestines.  While three grams of gluten per day for several weeks are enough to cause gastrointestinal symptoms, ten grams of gluten per day for for several weeks are required to provoke sufficient antibody production so that the antibodies move out of the intestines and into the blood stream where they can be measured in blood tests.  Since you reduced your gluten consumption before testing, the antibody production went down and did not leave the intestines, hence lower than expected tTg IgA.   Still having abdominal pain and other symptoms this far out is indicative of nutritional deficiencies.  With such a severely damaged small intestine, you are not absorbing sufficient nutrients, especially Thiamine Vitamin B 1, so your body us burning stored fat and even breaking down muscle to fuel your body.   Yes, it is a very good idea to supplement with vitamins and minerals during healing.  The eight essential B vitamins are water soluble and easily lost with diarrhea.  The B vitamins all work together interconnectedly, and should be supplemented together.  Taking vitamin supplements provides your body with greater opportunity to absorb them.  Thiamine and the other B vitamins cannot be stored for long, so they must be replenished every day.  Thiamine tends to become depleted first which leads to Gastrointestinal Beriberi, a condition that doctors frequently fail to recognize.  Symptoms of Gastrointestinal Beriberi are abdominal pain and nausea, but neuropathy can also occur, as well as body and joint pain, headaches and more.  Heart rhythm disruptions including tachycardia are classic symptoms of thiamine deficiency.  Heart attack patients are routinely administered thiamine now.   Blood tests for vitamins are notoriously inaccurate.  You can have "normal" blood levels, while tissues and organs are depleted.  Such is the case with Gastrointestinal Beriberi, a thiamine deficiency in the digestive tract.  Eating a diet high in carbohydrates, like rice, starches, and sugar, can further deplete thiamine.  The more carbohydrates one eats, the more thiamine is required per calorie to turn carbs into energy.  Burning stored fats require less thiamine, so in times of thiamine shortage, the body burns fat and muscles instead.  Muscle wasting is a classic symptoms of thiamine deficiency.  A high carbohydrate diet may also promote SIBO and/or Candida infection which can also add to symptoms.  Thiamine is required to keep SIBO and Candida in check.   Thiamine works with Pyridoxine B 6, so if Thiamine is low and can't interact with Pyridoxine, the unused B 6 accumulates and shows up as high.   Look into the Autoimmune Protocol diet.  Dr. Sarah Ballantyne is a Celiac herself.  Her book "The Paleo Approach" has been most helpful to me.  Following the AIP diet made a huge improvement in my symptoms.  Between the AIP diet and correcting nutritional deficiencies, I felt much better after a long struggle with not feeling well.   Do talk to your doctor about Gastrointestinal Beriberi.  Share the article linked below. Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Keep us posted on your progress!
    • Trish G
      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
    • trents
      knitty kitty asks a very relevant question. So many people make the mistake of experimenting with the gluten free diet or even a reduced gluten diet soon before getting formally tested.
×
×
  • 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.