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

...what To Do...

Angelina

By Angelina
in Coping with Celiac Disease

Recommended Posts

Angelina Newbie
Angelina
Posted

I dont really know what topic thing I should put this but i know that someone will read it somewhere.... I found out about Celiac 2 years ago.... When I was diagnosed the GI doctor told me I have a severe case of Celiac.... I believe it too..

How I found this out was by Antaflatic SHock.... I got a rash,fainted, stop breathing and sezier activity... I almost died... I kept fainting when the doctor were trying to figure out what was going on. nothing big hasnt happen til lastnight... I almost fainted. I guess I ate something I wasnt pose to and lately my skin been itching bad, stomach pain, cant sleep good, headach, depression, i do get up and downs on emotions... weak feeling... I hate it and dont know what to do!!!

One thing that is good is that I am 103 and use to be 80-93 pounds... so i am gaingin weight...

No one in my family has Celiac and no one around me has it... i feel like a sick lost puppy who cant find her way! I need friends and ppl in my life who knows what Im going through and know more information what Celiac.... im still struggling with Celiac....

Angel

xoxox

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

Celiac.com Sponsor (A8-M):


zip2play Apprentice
zip2play
Posted

You are amoung friends here! I hate that you have such a violent reaction! Great news that you are up to 103 pounds! GREAT!

Monica

jerseyangel Proficient
jerseyangel
Posted

Hi Angel--and welcome :) . Come here anytime, there are a lot of kind, knowledgeable folks here who will be happy to answer any questions you might have. We've all been throught it, or are going through it and really understand. I'm sorry about your recent reaction. The weight gain is a good sign--do you feel well most of the time? If you're having any trouble with being gluten-free, or need any info or advice, just ask! You can do searches on this site--there's a lot of info on foods, cosmetics, keeping your kitchen gluten-free, eating out tips, etc.

Veronica Rookie
Veronica
Posted

Angel, you sound just like me. I feel so alone in this. But since I have found this site I find myself comming here when I feel that way, and it helps.

I understand your reactions...I fainted about a month ago. Out cold outside, my dog woke me up. I feel like this is taking over my life. The more time I spend here reading how everyone else is dealing with this is actually giving me strength.

Celiac is a part of our lives that we have to learn to live with...we don't have a choice. It could be worse you know that right?

I know it takes longer for some people to feel better, and I think that's my biggest problem. I don't remember what it feels like to be healthy. I drag my butt out of bed everyday, no energy, depressed, I find it very hard to eat, either my stomach hurts, or I'm scared to eat. Sometimes it doesn't matter if it's gluten free or not it still hurts like hell. I'm making an appt with my dr for next week.

I may not be the right person to encourage you, but I wanted you to know you are not alone. You just had the guts to say how you really feel.

There's a topic in here about medic alert bracelets for Celiacs...you might want to consider one.

Angelina Newbie
Angelina
Posted
  • Author
Hi Angel--and welcome :) . Come here anytime, there are a lot of kind, knowledgeable folks here who will be happy to answer any questions you might have. We've all been throught it, or are going through it and really understand. I'm sorry about your recent reaction. The weight gain is a good sign--do you feel well most of the time? If you're having any trouble with being gluten-free, or need any info or advice, just ask! You can do searches on this site--there's a lot of info on foods, cosmetics, keeping your kitchen gluten-free, eating out tips, etc.

Cosmetics??? there are cosmetics that have gluten????

jerseyangel Proficient
jerseyangel
Posted

Angel--Yes, you need to be careful of your makeup--especially lip products. Really, anything that can get into your mouth, like lotions, shampoo, conditioner, etc. must be checked for gluten. Even if you don't feel a reaction, small amounts of gluten over a period of time will cause damage to your intestine. Bare Escentuals makeup (which I and others here use) is gluten-free *(most of the makeup is gluten-free, the skin care line is not). I have their gluten-free list if you want to see it. Neutrogena has a long list of gluten-free products--the list is on here, you can do a search for "Neutrogena" to view it. There are many mainstream brands of personal care products that are safe, but there are also many that contain wheat or oats. I would suggest that you read the labels of all of your products. See if wheat or oats are listed. If you are not sure about an ingredient, you can call the company. Their #'s are almost always listed on the label. You should then check any medications and vitamins that you may be taking. Also, toothpaste and mouthwash. All Crest and Colgate toothpastes are gluten-free. Feel free to PM me if you want--I'd be happy to help! :)

Carriefaith Enthusiast
Carriefaith
Posted

Welcome!

You seem quite sensitive to gluten. Try and make sure that anything that goes in or near you mouth is gluten-free. Check things like toothpaste, sunscreen, shampoo, conditioner, make-up, ect. Also, make sure that you have your own condiments, toaster, deep fryer, ect.

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

Celiac.com Sponsor (A8-M):


Guest nini
Guest nini
Posted

Angel, welcome... I never actually fainted, but I felt like I was going to on many occassions, I've had anaphylactic reactions to artificial fragrances (totally scary) so I can understand the feelings.

You are amongst friends here. I betcha there are more members of your family that are undiagnosed Celiac, it is genetic and not all Celiacs are underweight or have GI symptoms. Try to be patient with your family, and as you get educated more about Celiac, share your knowledge with your family, maybe something you learn will hit a nerve with someone in your family and they will get tested and find they have it too.

McDougall Apprentice
McDougall
Posted
I dont really know what topic thing I should put this but i know that someone will read it somewhere.... I found out about Celiac 2 years ago.... When I was diagnosed the GI doctor told me I have a severe case of Celiac.... I believe it too..

How I found this out was by Antaflatic SHock.... I got a rash,fainted, stop breathing and sezier activity... I almost died... I kept fainting when the doctor were trying to figure out what was going on. nothing big hasnt happen til lastnight... I almost fainted. I guess I ate something I wasnt pose to and lately my skin been itching bad, stomach pain, cant sleep good, headach, depression, i do get up and downs on emotions... weak feeling... I hate it and dont know what to do!!!

One thing that is good is that I am 103 and use to be 80-93 pounds... so i am gaingin weight...

No one in my family has Celiac and no one around me has it... i feel like a sick lost puppy who cant find her way! I need friends and ppl in my life who knows what Im going through and know more information what Celiac.... im still struggling with Celiac....

Angel

xoxox

Angelina Newbie
Angelina
Posted
  • Author
Angel, welcome... I never actually fainted, but I felt like I was going to on many occassions, I've had anaphylactic reactions to artificial fragrances (totally scary) so I can understand the feelings.

You are amongst friends here. I betcha there are more members of your family that are undiagnosed Celiac, it is genetic and not all Celiacs are underweight or have GI symptoms. Try to be patient with your family, and as you get educated more about Celiac, share your knowledge with your family, maybe something you learn will hit a nerve with someone in your family and they will get tested and find they have it too.

I dont know my real dad and I know I got it from him... He was irish! I have a step bro who was tested and he doesnt have it.... So it runs in my fathers side! thanks though! =)

McDougall Apprentice
McDougall
Posted

I dont really know what topic thing I should put this but i know that someone will read it somewhere.... I found out about Celiac 2 years ago.... When I was diagnosed the GI doctor told me I have a severe case of Celiac.... I believe it too..

How I found this out was by Antaflatic SHock.... I got a rash,fainted, stop breathing and sezier activity... I almost died... I kept fainting when the doctor were trying to figure out what was going on. nothing big hasnt happen til lastnight... I almost fainted. I guess I ate something I wasnt pose to and lately my skin been itching bad, stomach pain, cant sleep good, headach, depression, i do get up and downs on emotions... weak feeling... I hate it and dont know what to do!!!

One thing that is good is that I am 103 and use to be 80-93 pounds... so i am gaingin weight...

No one in my family has Celiac and no one around me has it... i feel like a sick lost puppy who cant find her way! I need friends and ppl in my life who knows what Im going through and know more information what Celiac.... im still struggling with Celiac....

Angel

I found out 16 months ago and have had many horrible reactions to accidental gluten injestion, it is everywhere. My reactions are simular from the slightest accident, even from some distilled viniger. Itching, insomnia, intense stomache pain, bad chills, numbness, depression, sleeplessness, migranes ect...I feel lost alot also. The good news Is for the last 3 weeks I have been sooooooo careful and feel a million times better. I guess I am very sensitive to gluten also. We just need to be super careful with our diets and I suggest you prepare ALL you own food ALWAYS, eating only the things you KNOW are safe. It's a pain but it is alot better than the alternative, good luck you are definately not alone, that is for sure.

Guest Robbin
Guest Robbin
Posted

Angel, Welcome. You are among friends here and we will all support you. I'm pretty new at this and still finding my way. I have had an analphylactic episode to figs, so I know the horror of that one. My son has had numerous problems with allergic reactions as well. I am wondering if anyone knows the answer, but could some people have celiac AND an allergy to gluten? I know that when I have even the slightest amount of barley, my throat feels like it is closing up and I rush to the benadryl and inhaler, but I haven't had the same reaction with wheat, oats, rye--those are all gastro-intestinal and headaches/body aches. Anyone have knowledge or dx with allergy to gluten plus celiac, or is this a stupid question? :blink:

aikiducky Apprentice
aikiducky
Posted

Yes it's possible to be both intolerant and allergic to gluten, those are two different reactions after all. In your case though it sounds more like you're intolerant to gluten and on top of that allergic to something in barley, no? Otherwise you would get the respiratory reactions to everything containing gluten, too.

Pauliina

Archived

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

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


  • Member Statistics

    • Total Members
      131,551
    • Most Online (within 30 mins)
      7,748
    Newest Member

    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.