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

Help! What Am I Doing Wrong?

Ranne10

Recommended Posts

Ranne10 Rookie
Ranne10
Posted

I've been on the diet for 5.5 weeks now. I saw results almost immediately - not perfect but I could tell it was working. I actually started to believ that I could feel good again. :( But tonight I am sitting here feeling like crying my heart out.

This week I went out for lunch a couple of times. I've been trying to avoid it but work was demanding and we needed to get out of the office. One day I went to PF Chang's. Wow! I felt normal. The food was great and I didn't feel ill at all. But yesterday we went to the Macaroni Grill. I ate the gluten free pasta and a salad. All was on the gluten free list.

Within an hour a severe migraine hit. Then the stomach... I still feel terrible and my joints are hurting. I feel like I did six weeks ago.

What did I do? I'm so careful. I read lables and I only eat off the gluten free menu. I couldn't be more disheartend than I feel right now. Is this normal? Did I get gluten even though it said 'gluten free'.

Any words of advise would be most appreciated.

If it says gluten free and I still get ill is it something else?

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

Celiac.com Sponsor (A8-M):


MitziG Enthusiast
MitziG
Posted

Well, no way to know for sure, but the likelihood is you got cross contaminated at Macaroni Grill. The "gluten free" menu at restaurants is helpful, but unless you speak specifically to the chef and server regarding how to handle/ prepare your dish, chances are good that you will get sick.

For instance, they may handle bread and then prepare your salad. Or crumbs may get transferred. Or your chicken may be cooked on the same grill that they just grilled a steak on- only that steak was maybe seasoned with a gluten containing seasoning first...

Kitchens are busy places, and even the most well intentioned chef can easily cross contaminate you. You have been gluten-free long enough now that your immune system is sensitive to even the tiniest bit of gluten.

Sadly, it isn't enough to just eat "gluten free" food. You really have to take the extra step to ensure gluten free preparation as well. It is a pain, and it is embarrassing- but the consequences of NOT doing it often mean ending up sick, as you have just found out.

LeahBanicki Rookie
LeahBanicki
Posted

It takes time for your body to heal and cross contamination is a VERY big deal I have learned.

Your intestines are trying so hard to heal and even the smallest crumb will trigger a reaction.

I avoided Dairy for a long time to help the healing process too. Dairy if hard for your damaged villi to digest, especially if your guts are very damaged.

You are probably detoxing from the wheat too.

You are early in the process and packing a lunch is a good thing to do. Restaurants are dangerous places for us Celiacs and they don't understand how militant we have to be to keep it away.

I have found strong peppermint tea to be helpful. Peppermint oil pills from the healthfood store can help with some of the 'hot belly' I would get.

Keep your diet simple for a while and keep track of what bothers you and what doesn't. You may discover a certain thing that triggers that makes no sense.

I cannot have any citrus fruits at all. NOT ONE SIP! or 5/6 days of terrible gut pain.

It's tricky trying to heal something you use every day. You can't tell your intestines to go on best rest, it is a useful part of your body that has to heal and work at the same time.

hang in there... We have all gone through this too.

dilettantesteph Collaborator
dilettantesteph
Posted

Our different levels of sensitivity vary. Some of us have no problems eating in restaurants, and some of us get bothered by the tiniest amount of cc. Even if you are one who can't eat in restaurants, you can still go along with friends and coworkers and bring your own. Or, you can eat first and just socialize.

Cara in Boston Enthusiast
Cara in Boston
Posted

My husband keeps nagging me to go out to eat. We tried it a few times in the beginning but didn't have good luck.

I just accept the fact that no matter how careful I am about what I eat, I can't expect the random cook, server, table cleaner, etc. in a restaurant to have the same standards. Even if they have a gluten-free menu, it does not mean everyone who has contact with your food is trained or even paying attention. One small mistake means my son or I am sick for about a week. It is just not worth it to us.

There is ALWAYS an alternative (bring your own meal, eat first, just enjoy drinks, etc.) to eating out. At first I felt awkward, now it is really no big deal. We just went to a wedding as a family and after one or two questions, no one barely noticed that we had brought our own food and we were able to sit and enjoy a meal with everyone. I'm so glad I stuck to my guns and didn't let the kitchen "try" to make us a gluten-free meal.

Cara

MichelleD Newbie
MichelleD
Posted

Have you looked up "gluten withdrawal". About the same time frame you were, I was depressed, crying, totally not myself. I felt worse than when I started. It did pass. Now, when I get "glutened" my reactions are physical so I know when it happened and the emotional piece a day or two later makes sense. Be kind to yourself, this is a huge change to your lifestyle and body, it will take time to settle in again.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,898
    • Most Online (within 30 mins)
      7,748
    MLucia
    Newest Member
    MLucia
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
×
×
  • 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.