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

Horrible Relapse After More Than 3 Years


blancasagro

Recommended Posts

blancasagro Newbie

Im looking for some advise here. I was diagnose with celiac in 2009.  Before I was diagnose I lost 20 pounds just in one month, Thank Good my gastroenterologist test me for gluten and it took just one month to get the right diagnosis to start my gluten free diet.

 

It took like a year and a half to feel normal, even after I started gluten free I had:

horrible pain in my stomach

diarrhea

insomnia

nightmares

sore joints

nausea

migraines

panic attacks

extreme fatigue...

 

My symptoms began to get better until most of them disappeared, maybe I had some nausea once in a while or some light stomach pain.

 

My problem is that maybe i got too confident on the variety of gluten free menus in the restaurants and started eating out like once in a week, gluten free pizza, or gluten free pasta and the diarrhea started again.  Now I feel horrible, my stomach pain is stronger than before.  The worst part is the extreme fatigue,I've been late for work almost daily for two weeks and I lost 9 pounds. I have no appetite, I'm having maybe two light lunches a day and minutes after I eat I need to go to the bathroom.  is frustrating feeling so bad after more than 3 years gluten free.  I thought I had won the battle against gluten, immediately I notice i got glutened I started eating just fruits, veggies and apple juice.  No milk, no meats, no fried foods, no tomato sauce, no processed foods...but I still feel horrible.  I had one ct scan, lots of labs and everything seems normal.  Im'having an endoscopy on Monday.  I have been feeling like this for two weeks and I feel like I can't take it anymore.  I have horrible panic atacks and stupid arguments with my boyfriend beacuse of my mood swings. 

 

If someone knows a way to get better please tell me, this is the first time in all this years that I feel hopeless. 


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



Celiac.com Sponsor (A8-M):



notme Experienced

if you were eating out alot, you were probably getting cross contaminated on a regular basis.  so, maybe you need to go back to eating plainly, cooking/preparing your own meals, no eating at restaurants.  be strict with your diet.  good that you're getting an endoscopy in case there's something else going on.  i hope you feel better.

bartfull Rising Star

I think eating just fruits, veggies, and apple juice might be prolonging the problem. Those will give anyone D if that's all they are eating. Get some chicken or turkey and eat that. Maybe some potatoes.

kareng Grand Master

Are the blood tests they just took positive for Celiac antibodies? That would show you are getting enough gluten to give you a reaction.

blancasagro Newbie

I went to the general dr. and she order me the regular test: CBC with Sed Rate, CMP, THS... because she insists it is something else, like the thyroid or colitis.  I had all the tests until I got an appointment with my gastroenterologist. As soon as he entered the office he told me "you are in pain" because the look in my face and he noticed my weight loss.  Mostly I have been eating fruits and veggies,

I simply swallow the food against my will because I have no appetite at all, and as soon as i start eating I feel weird bowel movement. Some times I need to leave the food without finishing to go straight to the bathroom.  I saw my gastroenterologist like a month ago because of some reflux and stomach pain,we both thought it was gastritis, but because of the weight loss we now  think that I had some hidden gluten.  I don't eat meat, but I ate salmon two days this week, and mostly raw veggies and fruits.. some home made mashed potatoes too. I usually don't eat at restaurants and I know it was my mistake to believe in the gluten-free menus  :angry:  This have been the worst two weeks of my life, I just will like to know when I'm going to get better 

kareng Grand Master

Its just normal Celiac follow-up to blood test every year. I would insist they do that to make sure you aren't having an issue accidentally eating gluten.

 

Open Original Shared Link

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. - trents replied to colinukcoeliac's topic in Gluten-Free Restaurants
      3

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

    2. - Scott Adams replied to colinukcoeliac's topic in Gluten-Free Restaurants
      3

      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

    3. - Scott Adams replied to Colleen H's topic in Coping with Celiac Disease
      4

      Barilla gluten free pasta

    4. - knitty kitty commented on Scott Adams's article in Latest Research
      2

      Do Severe Symptoms at Celiac Diagnosis Predict Long-Term Health? (+Video)

    5. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      33

      Insomnia help

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

    • Total Members
      133,477
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome to the the celiac.com community @colinukcoeliac! I am in the USA but I don't think it is any different here in my experience. In some large cities there are dedicated gluten free restaurants where only gluten free ingredients are found. However, there are a growing number of mainstream eatery chains that advertise gluten free menu items but they are likely cooked and prepared along with gluten containing foods. They are just not set up to offer a dedicated gluten free cooking, preparation and handling environment. There simply isn't space for it and it would not be cost effective. And I think you probably realize that restaurants operate on a thin margin of profit. As the food industry has become more aware of celiac disease and the issue of cross contamination I have noticed that some eateries that used to offer "gluten free" menu items not have changed their terminology to "low gluten" to reflect the possibility of cross contamination.  I would have to say that I appreciate the openness and honesty of the response you got from your email inquiry. It also needs to be said that the degree of cross contamination happening in that eatery may still allow the food they advertise as gluten free to meet the regulatory standards of gluten free advertising which, in the USA is not more than 20ppm of gluten. And that is acceptable for most celiacs and those who are gluten sensitive. Perhaps you might suggest to the eatery that they add a disclaimer about cross contamination to the menu itself.
    • Scott Adams
      This is a very common source of frustration within the celiac community. Many restaurants, including large chain restaurants, now offer a "gluten-free" menu, or mark items on their menu as gluten-free. Some of them then include a standard CYA disclaimer like what you experienced--that they can't guarantee your food will be gluten-free. Should they even bother at all? This is a good question, and if they can't actually deliver gluten-free food, should they even be legally allowed to make any claims around it?  Personally I view a gluten-free menu as a basic guide that can help me order, but I still explain that I really have celiac disease and need my food to be gluten-free. Then I take some AN-PEP enzymes when my food arrives just in case there may be contamination. So far this has worked for me, and for others here. It is frustrating that ordering off a gluten-free menu doesn't mean it's actually safe, however, I do feel somewhat thankful that it does at least signal an awareness on their part, and an attempt to provide safe food. For legal reasons they likely need to add the disclaimer, but it may also be necessary because on a busy night, who knows what could happen?
    • Scott Adams
      That is a very old study that concludes "Hypothetically, maize prolamins could be harmful for a very limited subgroup of CD patients", and I've not seen any substantive studies that support the idea that corn would be a risk for celiacs, although some people with celiac disease could have a separate intolerance to it, just like those without celiac disease might have corn intolerance.
    • knitty kitty
      @cristiana,  It's the same here, doctors check just Vitamin D and B12 routinely.  The blood tests for other B vitamins are so inaccurate, or expensive and time consuming, doctors tend to gloss over their importance.   B vitamins are water soluble and easily excreted in urine.  Some people need to be careful with Pyridoxine B6 because they can store it longer than most due to genetics.  A symptom of Pyridoxine B6 deficiency is peripheral neuropathy.  Taking Pyridoxine B6 will relieve the neuropathy, but excess Pyridoxine can also cause peripheral neuropathy.  So, if neuropathy symptoms return, stop taking the Pyridoxine and it will resolve quickly as the excess Pyridoxine is used.  But the body still needs the other B vitamins, so taking them separately without Pyridoxine can be an option.   If one is low in Vitamin D, one may also be low in the other fat soluble vitamins, A, E, and K.  Vitamin K is important to bone and circulatory  health.  Vitamin A helps improve the health of the intestine, eyes, skin and other mucus membranes.  Vitamin E helps our immune system stay healthy.   Important minerals, iron, magnesium and calcium, as well as a dozen or so trace minerals are important, too.  They need the B vitamins to be utilized, too.   Our gluten free diets can be low in B vitamins.  Our absorption can be affected for many years while we're healing.  Supplementing with B vitamins boosts our absorption and helps our bodies and our brains function at optimal levels.   Hope this helps!
    • Wheatwacked
      Welcome to the forum @colinukcoeliac. Letting them know that they lost a customer because they could not satisfy cross contamination needs may incline them to fix that problem.  It was good of tnem to alert you.  The more they know...
×
×
  • 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.