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'm New And Just Not Getting It Right!


texasgal

Recommended Posts

texasgal Newbie

I'm new to this site and could use some help. You all seem to be so willing and friendly so I thought I would ask. I'll make it short. Been on the diet for almost a year and maybe I got a little too relaxed or maybe it was simply cross contamination but the last 4 days I was soooo ill. The body aches - oh my God - and migraine headaches, nothing helps. I feel better today but this last episode I thought I was literally dying. All I ate was a corn tortilla with beef, salsa and black beans at a restaurant and by that afternoon I was full blown glutened. This is not the first time in the last year this has happened and I think I'm being careful and then wham - I'm sick again. Did I mention how bad the body aches are????? Fortunately I have no other food allergies so I know it was gluten. Anyway, I guess I'm feeling a little defeated today. Probably not my best day.


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



Celiac.com Sponsor (A8-M):



kbtoyssni Contributor

The thing that jumps out at me is you ate at a restaurant. Restaurants are very risky so I would avoid those, especially if you're not feeling well. Give you body some time to heal which you eat guaranteed gluten-free meals at home. I tend to eat out more than most celiacs, but if I've been glutened, I ban myself from restaurants until I heal.

texasgal Newbie
The thing that jumps out at me is you ate at a restaurant. Restaurants are very risky so I would avoid those, especially if you're not feeling well. Give you body some time to heal which you eat guaranteed gluten-free meals at home. I tend to eat out more than most celiacs, but if I've been glutened, I ban myself from restaurants until I heal.

Thanks. Will do.

missy'smom Collaborator

It could very well be cross-contamination. I get really sick from just a little CC. When I do feel limited I focus on what other good things are in my life and what I CAN do. Sorry you feel so unwell. ((HUG)) This disease can be really debilitating. Do your best to take extra good care of yourself and don't make any important changes or decisions until you feel better.

texasgal Newbie
It could very well be cross-contamination. I get really sick from just a little CC. When I do feel limited I focus on what other good things are in my life and what I CAN do. Sorry you feel so unwell. ((HUG)) This disease can be really debilitating. Do your best to take extra good care of yourself and don't make any important changes or decisions until you feel better.

Good Advice. Thanks.

mommyagain Explorer

When you do venture back out to a restaurant, make sure you tell the server that the MUST tell the cook that you have food allergies and your food has to be cooked separately. Even if you are ordering something "safe", they could plop your corn tortilla right on the spot where a flour tortilla was, and you end up sick.

Actually, I usually say "severe allergies" because it gets their attention. I know people who say "gluten intolerance" instead of allergy but I think most people think of an intolerance as being less of a problem than allergy. I figure that when I'm at a restaurant, I'm not there to educate, I'm there to eat! :D

bfarnsworth0709 Rookie

I agree. Definitely say "severe food allergy". I know for me it helps get their attention, and they are way more helpful to adapt to my needs. If I say "gluten intolerance" they usually don't know what the heck I am talking about and therefore, blow it off as not a big deal. Even if after I say "severe food allegy" and they have that deer in a head lights look, I will use the words, "deathly ill" to reiiterate that I am being absolutely serious. And I am not lying b/c sometimes when we are glutened, we swear we are dying and sometimes would rather just die than feel as miserable as we are feeling.


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



Celiac.com Sponsor (A8-M):



tarnalberry Community Regular

cross contamination from the tortilla?

sauce to marinate the beef in?

filler/flavor in the beans?

filler in the spices?

other contamination in the kitchen?

there are a number of potential sources - ditto on avoiding restaurants until healthy, and then being very clear on the need to not contaminate your food when you're willing to take the risk again.

texasgal Newbie

You're right. I need to be a little more aggressive when I order. Sometimes I have said I have can't eat flour and then they think I'm on the Adkins Diet .... thanks.

texasgal Newbie
cross contamination from the tortilla?

sauce to marinate the beef in?

filler/flavor in the beans?

filler in the spices?

other contamination in the kitchen?

there are a number of potential sources - ditto on avoiding restaurants until healthy, and then being very clear on the need to not contaminate your food when you're willing to take the risk again.

Wow so many choose from. It could have been anything. I know one thing for sure, I won't be eating at that restaurant again. And I'll certainly work on being more clear when ordering. Thanks.

texasgal Newbie
I agree. Definitely say "severe food allergy". I know for me it helps get their attention, and they are way more helpful to adapt to my needs. If I say "gluten intolerance" they usually don't know what the heck I am talking about and therefore, blow it off as not a big deal. Even if after I say "severe food allegy" and they have that deer in a head lights look, I will use the words, "deathly ill" to reiiterate that I am being absolutely serious. And I am not lying b/c sometimes when we are glutened, we swear we are dying and sometimes would rather just die than feel as miserable as we are feeling.

"Severe food allergies" yes, I'll use that term and when I think of the last 4 days, I'll have no problem at all using "deathly ill". Thank the Lord, it is passing. I appreciate your comments.

Archived

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

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

    • Total Members
      132,919
    • Most Online (within 30 mins)
      7,748

    globello
    Newest Member
    globello
    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

    • 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.
    • Russ H
      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
×
×
  • 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.