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
      132,102
    • Most Online (within 30 mins)
      7,748
    noharashinchann12
    Newest Member
    noharashinchann12
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      So far 3 months in - worsening symptoms. I have had the worst constipation in my life and I am primarily eating naturally gluten-free foods like potatoes, eggs, salad with homemade dressing, corn tortillas, etc. I hate gluten-free bread and pasta so I don't eat it. Occasionally I eat gluten-free almond flour crackers. As stated in the post, I don't have any vitamin deficiency. I was already tested.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      As I said, I do not have any vitamin deficiency. I was already tested.
    • Wheatwacked
      High DGP-A with normal IGA

      By Wheatwacked · Posted

      Talk to your  Talk to your provider about testing for vitamin and mineral deficiency.  celiac disease causes malabsorption and eventually malnutrition.  Especially vitamin D. Having the gallbladder removed seems to be a common step on the way to a Celiac Disease Diagnosis,  Gallbladder is a sympton of deficient Choline. Eggs and red meat are the primary source..Choline makes up a majority of the bile salts.  The bile gets thick, doesn't get enough into intestine to digest fats well.  Can eventually back up into gallbladder, cause gallstones.  Without bile, bowel movements can become hard. Try to avoid all processed foods while you are healing, The gluten-free foods are not fortified with vitamins and use various ingredients to mimic fat that bothers many Celiacs.  Choose vegatables with low omega 6.  Optimum omega 6 to omega 3 ratio is less than 3:1.  Wheat flour is 22:1.  Grass fed milk is 1:1.   Commercial Dairies milk is 5:1.  They feed wheat, rye and barley Gluten as part of the food mix.  
    • trents
      High DGP-A with normal IGA

      By trents · Posted

      Your DGP-G is also high. The thing to do now would be to trial the gluten-free diet for a few months to see if there is improvement in symptoms.
    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      Welcome to the forum, @Roses8721! How long were you off gluten before getting the celiac blood testing done? The testing is not valid after having been gluten free for a significant period of time. Many of your symptoms align with celiac disease.
×
×
  • 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.