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So Glad I Found This Forum! New Here :)

CrazyCandleLady

By CrazyCandleLady
in Meet Up Room

Recommended Posts

CrazyCandleLady Newbie
CrazyCandleLady
Posted

Just found this forum and so relieved from what I am reading to know I am not alone. I have recently been diagnosed with quite the wide array of food allergies. I am highly allergic to wheat, followed by dairy, yeast, egg whites, chocolate (the actual cocoa beans) and corn. My Doctor believes that I actually have Celiac disease but at this point I am not going to be tested as I am beginning to think that indeed ignorance is bliss.  I suspect I have had these allergies for quite a while and just thought all my tummy issues were "normal".

 
I have loved cooking since I was young girl and am referred to as the "Paula Deen" in our family. I feel like I am living in a snow globe that is constantly being shaken - every time I go to the grocery store now, I just want to cry. I am trying to figure out what my new normal is. I know on days I really watch what I eat I do feel better - no migraines, no tummy troubles, no watery eyes & nose and no rash on my face. I have started a new food diary and am paying closer attention to what I eat and what is causing the most symptoms. My Doctor says to just focus on the top 3 right now so I won't be so overwhelmed. 
 
My family is somewhat supportive but like me they are unsure how to process all this information. Hints, tips or positive thoughts would be greatly appreciated. Take care!  :) 
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kareng Grand Master
kareng
Posted

Welcome!  Here is a good place to start.  Then read around and see what you can learn from others, too.

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

Maybe you should get diagnosed if it will help you to take the disease seriously?  Sounds like you don't quite believe you have a real need to eat gluten-free.

CrazyCandleLady Newbie
CrazyCandleLady
Posted
  • Author

Thank you for the link - it is a goldmine of information! I suspect you are correct and I am in the "denial phase" of this whole situation. My Doctor is fairly certain I have Celiac disease and I know in my head (and stomach) that she is right. :)

GFinDC Veteran
GFinDC
Posted

Just so you know, celiac disease is not an allergy.  Allergies are IgE immune cell responses.  Celiac disease is an IgG or IgA immune response.  Allergies tend to start causing symptoms very quickly, and they can stop quickly also once the allergen is removed.  The IgA and IgG immune cells tend to be a little slower to start causing symptoms/damage, and they tend to last longer and not stop doing their work as fast.  Like 10 days or more in some people.  So celiac is really very different from an allergy in the way it affects your body.  It is possible to have an allergy (IgE) a well as celiac disease though.  What that means is if you get gluten in your body, it will continue damaging your body for a couple weeks.  So that's why it is important to avoid all traces of gluten in the diet.    Since it is an immune response, even a little will cause a reaction.  The immune system is very sensitive.   Just a little gluten each week means your body will never stop attacking itself.

But enough of that cheerful stuff, welcome to the forum! :)

CrazyCandleLady Newbie
CrazyCandleLady
Posted
  • Author

Just so you know, celiac disease is not an allergy.  Allergies are IgE immune cell responses.  Celiac disease is an IgG or IgA immune response.  Allergies tend to start causing symptoms very quickly, and they can stop quickly also once the allergen is removed.  The IgA and IgG immune cells tend to be a little slower to start causing symptoms/damage, and they tend to last longer and not stop doing their work as fast.  Like 10 days or more in some people.  So celiac is really very different from an allergy in the way it affects your body.  It is possible to have an allergy (IgE) a well as celiac disease though.  What that means is if you get gluten in your body, it will continue damaging your body for a couple weeks.  So that's why it is important to avoid all traces of gluten in the diet.    Since it is an immune response, even a little will cause a reaction.  The immune system is very sensitive.   Just a little gluten each week means your body will never stop attacking itself.

But enough of that cheerful stuff, welcome to the forum! :)

 

Thank you for the info - this has been an ongoing issue - they suspected I had it a few years ago but after 5 months of misdiagnosed appendicitis and endless testing & treatments for everything from diverticulitis to parasites to Crohn's disease I had enough of doctors and just assumed I was just destined to not ever really feel good again. I have had blood test results for a while that they knew something was wrong - just didn't know it was - lots of tummy troubles (bloating and tummy is too tender to touch) and odd symptoms that no one put together. It was actually a skin allergy test gone wrong that lead to an in-depth blood work up that actually lead to some "unexpected" results that started to put this whole puzzle together. 

 
Forgive me for not using the correct lingo - this is all new to me and like I said I am still processing it all.  I appreciate your help &
 input. :)
GFinDC Veteran
GFinDC
Posted

Thank you for the info - this has been an ongoing issue - they suspected I had it a few years ago but after 5 months of misdiagnosed appendicitis and endless testing & treatments for everything from diverticulitis to parasites to Crohn's disease I had enough of doctors and just assumed I was just destined to not ever really feel good again. I have had blood test results for a while that they knew something was wrong - just didn't know it was - lots of tummy troubles (bloating and tummy is too tender to touch) and odd symptoms that no one put together. It was actually a skin allergy test gone wrong that lead to an in-depth blood work up that actually lead to some "unexpected" results that started to put this whole puzzle together. 

 
Forgive me for not using the correct lingo - this is all new to me and like I said I am still processing it all.  I appreciate your help &
 input. :)

 

No apology needed at all, just trying to help.   There is lots to learn about celiac,especially for newbies.  Doctors are still learning about it too after all.  Yo don't need all these tips below, but some may help.

 

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

Helpful threads:

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101

https://www.celiac.com/forums/topic/91878-newbie-info-101/

What's For Breakfast Today?

https://www.celiac.com/forums/topic/81858-whats-for-breakfast-today/

pricklypear1971 Community Regular
pricklypear1971
Posted

Good news is if your allergies (not sure how they were dx'ed) are intolerances and you have a leaky gut (celiac?) that heals, perhaps you'll get some of those foods back....which will make life easier.

Welcome!

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CrazyCandleLady Newbie
CrazyCandleLady
Posted
  • Author

Good news is if your allergies (not sure how they were dx'ed) are intolerances and you have a leaky gut (celiac?) that heals, perhaps you'll get some of those foods back....which will make life easier.

Welcome!

 

Thanks! This is such a new world for me and just reading thru posts here I have learned so much - the 2 main things are there is hope that  I will feel better and I need to take this all very seriously. :)

 

My allergies were found thru blood testing. I am not sure what type of test it was just that my insurance wasn't crazy about the cost and it almost 4 weeks to get the results. I am going to get a copy of it and hopefully that will help me sort thru all this. My doctor has gone on maternity leave so it will be a few weeks before I see her again (I live in a small town and am thrilled to have finally found a Dr that is determined to figure out what is going on). A little history - I own my own business - graphic artist turned candle maker when I fell in love with a cowboy and moved from the big city to the country - a hobby became a booming business. For the past few years I have developed migraines and fatigue  - after exhausting all other causes my Doctor recommended we revisit allergy testing. Several years ago I had skin testing and pretty much am allergic to everything - this time skin test showed nothing  - unknowingly I had taken Phenergan a day before due to a massive migraine/nausea which interfered with the reactions on this round of skin tests. The doctor decided to go ahead and draw blood and see if they could see if they could get the results that way since coming off all allergy meds was keeping me with a constant migraine.  

 

Had you ask me at any point before this I would have told you I absolutely do not have any food allergies/intolerances, I would have been wrong. It was at this point my doctor pulled my medical history and discovered I have actually had a lot of symptoms that were just never put together. Thyroid issues, severe B-12 deficiency, along with a couple other odd vitamin deficiencies,  I have had abdomen issues all my life but in the past few years I hurt 99% of the time. I had an appendectomy several years ago and the pain has progressively gotten worse since then. I am one of those people who doesn't really sit still so I have just tried to go on with life and not complain much as I am sure my family is tired of hearing that I don't feel good. I have an insane pain tolerance (2 babies all natural - walking around up until 5 minutes before I delivered) I am thinking now  - after reading every bit of info I can get my hands on - while I was ignoring the pain I think I have probably done a world of harm to my body.   :(

  • 2 weeks later...
Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

But - you have worked it out now and can start to heal :)

Have you had a blood test for celiac? I would guess you could get that done without waiting for your doctor to return.

A diagnosis may be helpful for you. That said, many of us are self diagnosed or non celiac gluten intolerant, and choose gluten-free for life, once we realize the benefits.

Welcome and good luck

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    • trents
      Hidden Gluten in distilled vinegar

      By trents · Posted

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      Hidden Gluten in distilled vinegar

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      No they do not contradict each other. Just like frying oil can be cross contaminated even though the oil doesn't contain the luten protein. The same is the same for a distilled vinegar or spirit which originally came from a gluten source. Just because you don't understand, doesn't mean you can tell me that my sentences contradict each other. Do you have a PhD in biochemistry or friends that do and access to a lab?  If not, saying you don't understand is one thing anything else can be dangerous to others. 
    • Mynx
      Hidden Gluten in distilled vinegar

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      The reason that it triggers your dermatitis herpetiformis but not your celiac disease is because you aren't completely intolerant to gluten. The celiac and dermatitis herpetiformis genes are both on the same chronometer. Dermatitis herpetoformus reacts to gluten even if there's a small amount of cross contamination while celiac gene may be able to tolerate a some gluten or cross contamination. It just depends on the sensitivity of the gene. 
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      @Mynx, you say, "The reason this is believed is because the gluten protein molecule is too big to pass through the distillation process. Unfortunately, the liquid ie vinegar is cross contaminated because the gluten protein had been in the liquid prior to distillation process." I guess I misunderstand what you are trying to say but the statements in those two sentences seem to contradict one another.
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