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

Hoodies

Brandiwine

By Brandiwine
in Coping with Celiac Disease

Recommended Posts

Brandiwine Contributor
Brandiwine
Posted

I thought this was cute.... Open Original Shared Link If I didn't feel like I already have to repeat myself enough with the 21 questions I get about my diet, I'd get one. 

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

Celiac.com Sponsor (A8-M):


LauraTX Rising Star
LauraTX
Posted

Haha yeah, a popular blogger sells gluten-free skull and crossbones shirts, but I feel the same way, don't want to open myself up to too much conversation.    Would be good to wear to a gluten-free event or support group!

Brandiwine Contributor
Brandiwine
Posted
  • Author

I have seen them with the green Celiac ribbon too for awareness, but like you said best worn to a meeting or an event. I get so tired of having "that" conversation... 

BlessedMommy Rising Star
BlessedMommy
Posted

I find that it's best to keep my explanations short and simple. "If I eat gluten, I will risk getting a stroke and dying. So I have to be strict, there's no choice."

Brandiwine Contributor
Brandiwine
Posted
  • Author

I always try the short and simple route but they have to give me the sad eyes and ask "You can just pick off and eat the toppings, right?" ugh lol What I really hate is when people try to make me food that is "gluten free" or pick it up from a bakery in town that claims it is... I feel like jerk when I don't eat it. Some times I will just say "My kids with love this I will wait and share it with them" and just toss it out when I get home. I know it is lying but some how it makes me feel better than just shooting them down.... 

BlessedMommy Rising Star
BlessedMommy
Posted

Oh yeah, that is frustrating! What I do sometimes especially if it's a potluck setting and somebody brought a "gluten free" dish, is I smile and say, "Okay," and then just don't eat it and I don't mention it to them. That's harder though when somebody tries to make something and send it home specifically for you.

BlessedMommy Rising Star
BlessedMommy
Posted

In response to CC issues, I tend to tell people that I got a relapse of neuro symptoms just from bringing bread in my house for my kids. Then they kind of get how serious it is and how important it is to be strict.

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

Celiac.com Sponsor (A8-M):


rrmac Apprentice
rrmac
Posted

In response to CC issues, I tend to tell people that I got a relapse of neuro symptoms just from bringing bread in my house for my kids. Then they kind of get how serious it is and how important it is to be strict.

OMG did you really get a relapse from bring it in to your house?

 

I'm new here I was officially diagnosed April 2014 after being told by a stupid gastro in 2005 that I was not Celiac, my son was diagnosed 2 months later. I had gastro symptom back in 2005 and went on the SCD diet for a year which probably contributed to the false neg after the Gastro had me eat bread for a few days (8) before the biopsy. 

 

After the that I stayed low carb since any increase in gluten (I thought it was a carb reaction) would cause gastro problem HOWEVER I always had Neuro issues which I didn't connect. Crazy blood pressure swings up and down the same with the heart rate way up and way down, small fiber neuropathy, spine pain, eye sight problems, anxiety, bladder issues, constant nausea which varied in its severity, severe fatigue, headaches that last for days .

 

My son who had severe small intestine damage also had mostly neuro symptoms the only gastro symptom he has was that he got full really fast.

 

So if you have any advice or would be so kind to share your story Im all ears.

 

Thanks Diane

 

PS I just tell people if I don't cook it I don't eat it - that seems to work for me.

BlessedMommy Rising Star
BlessedMommy
Posted

After a few weeks of my kids gluten challenging, I started getting severe chronic headaches and some speech difficulty. I got rid of most of it from the house and tried to be more careful and my symptoms subsided. Considering that my symptoms when I went gluten free included chronic severe headaches and a full TIA with numbness and speech difficulties, I doubt that these symptoms were coincidental.

Brandiwine Contributor
Brandiwine
Posted
  • Author

After a few weeks of my kids gluten challenging, I started getting severe chronic headaches and some speech difficulty. I got rid of most of it from the house and tried to be more careful and my symptoms subsided. Considering that my symptoms when I went gluten free included chronic severe headaches and a full TIA with numbness and speech difficulties, I doubt that these symptoms were coincidental.

 

I have speech difficulty to with CC. We found that my oldest son had celiac only a month or so after I did. It was another few months before I started noticing my youngest son getting mouth ulcers and turned out he also had it. We all get different symptoms, my sons don't seem to get the gastro symptoms as much. Elijah ( my oldest) has gotten sick to his stomach from eating a hotdog off of a regular bun. Not the bun just the hot dog but he was served with the hotdog in the bun and decided to eat it anyway. They aren't as sensitive as I am though with CC. I can't use shared surfaces that haven't been cleaned thoroughly. Can't share pots and pans or things of that nature. I can't kiss my nieces on the lips if they have had anything to eat in last hour. I won't get as sick as if I ate something with gluten but I will feel tired, get a head ache, mix my words up, that sort of thing. 

BlessedMommy Rising Star
BlessedMommy
Posted

Keep in mind that some celiacs don't get obvious symptoms from minor CC, but it is still damaging their gut. So it's important for all celiacs to be careful of CC, whether they are having outward symptoms or not.

rrmac Apprentice
rrmac
Posted

Keep in mind that some celiacs don't get obvious symptoms from minor CC, but it is still damaging their gut. So it's important for all celiacs to be careful of CC, whether they are having outward symptoms or not.

That is terrifying so how can I be sure that my son and I are not being CC are blood tests the way to go and who runs them the Gastros office is not interested in follow up blood tests?

 

The non-celiac's in the house are not willing to go gluten-free, I can't blame them but I have a lot of work to do I wish I could build myself a separate kitchen. lol

 

wow Brandiwine I also have speech issues a lot of symptoms I've had I blamed on Hashimoto's thyroiditis.

 

feeling overwhelmed 

BlessedMommy Rising Star
BlessedMommy
Posted

Do the non-celiacs in your house cook? In my house, they don't, so I call the shots. But I don't insist that they go gluten free, I just ask them to avoid eating gluten in the house. They can eat all they want in restaurants, at potlucks, or friends' houses.

frieze Community Regular
frieze
Posted

That is terrifying so how can I be sure that my son and I are not being CC are blood tests the way to go and who runs them the Gastros office is not interested in follow up blood tests?

 

The non-celiac's in the house are not willing to go gluten-free, I can't blame them but I have a lot of work to do I wish I could build myself a separate kitchen. lol

 

wow Brandiwine I also have speech issues a lot of symptoms I've had I blamed on Hashimoto's thyroiditis.

 

feeling overwhelmed

 

you know that saying,   "if mamma ain't happy, ain't nobody happy?"

Brandiwine Contributor
Brandiwine
Posted
  • Author

My room mate eats gluten but only prepackaged like snack cakes. He eats what we eat. The only exception is sandwich bread because we all pack our lunch and gluten-free bread is so expensive. He uses a paper towel or paper plate to make his sandwich then wipes the counter down afterward. Once you have been on the diet you should be able to tell if you are getting CC. If you are one of the ones who don't show symptoms all I can recommend is to be super careful and read labels, even ones you have already checked before because they tend to change without notice. 

Serielda Enthusiast
Serielda
Posted

I love it, I plan to order one for humor purposes when i get the chance. 

I thought this was cute.... Open Original Shared Link If I didn't feel like I already have to repeat myself enough with the 21 questions I get about my diet, I'd get one. 

rrmac Apprentice
rrmac
Posted

Do the non-celiacs in your house cook? In my house, they don't, so I call the shots. But I don't insist that they go gluten free, I just ask them to avoid eating gluten in the house. They can eat all they want in restaurants, at potlucks, or friends' houses.

Yes they do cook my 23 yr old daughter is trying but I caught her not washing her hands after handling bread. ughhhhh

cyclinglady Grand Master
cyclinglady
Posted

you know that saying, "if mamma ain't happy, ain't nobody happy?"

Ha! Ha! Frieze.....and so true!

cyclinglady Grand Master
cyclinglady
Posted

Yes they do cook my 23 yr old daughter is trying but I caught her not washing her hands after handling bread. ughhhhh

When we had one celiac in the house (hubby), we allowed gluten but I controlled EVERYTHING in the kitchen. When I was diagnosed (and my gluten-consuming kid became old enough to cook), we went completely gluten free. She takes gluten items to school (mini packs of cookies, croissants that I bag,etc.). She can not consume them in the house. She washes her hand upon returning from anywhere.

Our health is more important that my kid's wish to eat gluten. And when we did allow gluten, I did not eat it in front of my husband nor did he eat ice cream in front of me (milk allergy). I think that is called being supportive.

Some folks do well in a shared kitchen, but it is a relief for me not to worry about gluten in my own home. I can relax and heal.

Archived

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

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


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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

    • Scott Adams
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.