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

Hey Everyone


shauniscrazy

Recommended Posts

shauniscrazy Explorer

Hi I'm Shaun I recently found out I am allergic to gluten and cow dairy. I would like to talk to people about when they found out so i can learn more. I would prefer to talk to people closer to my age lol but i will listen to anyone. :D


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



Celiac.com Sponsor (A8-M):



GFinDC Veteran

Hi Shaun,

I was close to your age at one time, but it has only been a few decades, 3 maybe 4 tops. I stared out having lactose intolerance for 9 years or so, and then found out I had celiac disease. Celiac is not actually an allergy, allergies are IgE immune reactions. Celiac is IgA or IgG or some other immune reactions. IgE reactions are like hayfever type reactions where it affects breathing, skin, eyes etc,. People can take anti-histamines for IgE reactions, but they don't help much for celiac disease reactions. Well, that was pretty boring!

Anyhow, there are some other younger members on the forum, so maybe they will show up with some rad info for you. Do they still say rad? :) And welcome to forum we are glad to have you here!

shauniscrazy Explorer

Hi Shaun,

I was close to your age at one time, but it has only been a few decades, 3 maybe 4 tops. I stared out having lactose intolerance for 9 years or so, and then found out I had celiac disease. Celiac is not actually an allergy, allergies are IgE immune reactions. Celiac is IgA or IgG or some other immune reactions. IgE reactions are like hayfever type reactions where it affects breathing, skin, eyes etc,. People can take anti-histamines for IgE reactions, but they don't help much for celiac disease reactions. Well, that was pretty boring!

Anyhow, there are some other younger members on the forum, so maybe they will show up with some rad info for you. Do they still say rad? :) And welcome to forum we are glad to have you here!

Thanks for your help and my doctor thinks i might have celiac disease but we dont know yet.

GFinDC Veteran

Hi Shaun,

Have you had the blood antibody tests and an endoscopy? If the blood antibodies are positive you may not need an endoscopy. Usually it takes a couple weeks to get the antibody results from a lab. It is helpful to get a paper copy of the resutls for yourself also. You might want to review them with another doctor later or even post them on the forum. There are some medical people on the forum who can help interpret them. It's important to keep eating gluten until all the tests are done.

Eating gluten-free is quite a challenge at first. We end up making a lot of our own food and snacks since some times you can't find things when you are out. Although fruit is often a good choice or nuts and they are widely available.

Take care,

Paul

shauniscrazy Explorer

Hi Shaun,

Have you had the blood antibody tests and an endoscopy? If the blood antibodies are positive you may not need an endoscopy. Usually it takes a couple weeks to get the antibody results from a lab. It is helpful to get a paper copy of the resutls for yourself also. You might want to review them with another doctor later or even post them on the forum. There are some medical people on the forum who can help interpret them. It's important to keep eating gluten until all the tests are done.

Eating gluten-free is quite a challenge at first. We end up making a lot of our own food and snacks since some times you can't find things when you are out. Although fruit is often a good choice or nuts and they are widely available.

Take care,

Paul

I just heard from my doctor today and she said that i tested negative and thanks.

eatmeat4good Enthusiast

Are you still going to be gluten free?

I am not your age, I'm 49, but I wondered if this means you will be eating gluten or if you will be gluten free due to allergy to it?

shauniscrazy Explorer

Are you still going to be gluten free?

I am not your age, I'm 49, but I wondered if this means you will be eating gluten or if you will be gluten free due to allergy to it?

i am gluten and dairy free still


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



Celiac.com Sponsor (A8-M):



justlisa Apprentice

Yes...I'm hijacking your thread (I just wanted to support my fellow geriatrics. I've got a good 3 decades on you, too, kiddo ;) )

But, seriously... I'm curious about how you came to suspect gluten/dairy? Symptoms? Any progress yet?

shauniscrazy Explorer

Yes...I'm hijacking your thread (I just wanted to support my fellow geriatrics. I've got a good 3 decades on you, too, kiddo ;) )

But, seriously... I'm curious about how you came to suspect gluten/dairy? Symptoms? Any progress yet?

Well i go to a doctor every now and then for my anxiety and i mentioned i feel sick all the time and she is a celiac so she thought i was and we did some tests that revealed that i have a bunch of allergies i was unaware of lol

justlisa Apprentice

Well i go to a doctor every now and then for my anxiety and i mentioned i feel sick all the time and she is a celiac so she thought i was and we did some tests that revealed that i have a bunch of allergies i was unaware of lol

So...how long have you been gluten/dairy free? Any improvement?

What allergies?

shauniscrazy Explorer

So...how long have you been gluten/dairy free? Any improvement?

What allergies?

My main food allergies are gluten and dairy. I have been mostly free of these for about 2 weeks i think. I have noticed a lot of improvement on how i feel.

kaitlynrose Rookie

Hi Shaun,

My name is Kaitlyn and I'm 17. I started eating gluten-free when I was 14. I was not officially diagnosed with celiac, but my cousin has it and her gastrointerologist said I most likely have it as well. Either way, eating gluten-free has changed my life for the better.

shauniscrazy Explorer

Hi Shaun,

My name is Kaitlyn and I'm 17. I started eating gluten-free when I was 14. I was not officially diagnosed with celiac, but my cousin has it and her gastrointerologist said I most likely have it as well. Either way, eating gluten-free has changed my life for the better.

Thank you for the reply kaitlyn. I believe it has changed my life for the better too. Is there any foods or resturants you would recommend?

kaitlynrose Rookie

Shaun- Yes, PF Changs is my favorite. It's a little pricey, but they have a menu with a great variety of dishes, and the gluten-free entrees are even served on completely different dishes. I have never had a bad experience there (i.e. cross contamination). The nearest one to my house is like an hour away though, so it's just for special occasions. I eat at a lot of mexican restaurants. I just have them prepare my meal with a corn tortilla in the usual flour one's place. Honestly I do not eat out very often, so I don't have many suggestions...

shauniscrazy Explorer

Shaun- Yes, PF Changs is my favorite. It's a little pricey, but they have a menu with a great variety of dishes, and the gluten-free entrees are even served on completely different dishes. I have never had a bad experience there (i.e. cross contamination). The nearest one to my house is like an hour away though, so it's just for special occasions. I eat at a lot of mexican restaurants. I just have them prepare my meal with a corn tortilla in the usual flour one's place. Honestly I do not eat out very often, so I don't have many suggestions...

Thank you lol. The nearest pf changs is about an hour from here too. So since you dont eat out often what do you make to eat?

Guest Runningdream

I love pf changs!!

shauniscrazy Explorer

I love pf changs!!

Ok lol but there arent any near me.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    2. - BlessedinBoston replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?

    3. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    4. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      14

      My only proof

    5. - marion wheaton posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,410
    • Most Online (within 30 mins)
      7,748

    Marilyn Gingras
    Newest Member
    Marilyn Gingras
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
×
×
  • 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.