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

New Here, My Story


mattathayde

Recommended Posts

mattathayde Apprentice

hello all,

ive been using this site for a while for info but i finally thought i should join.

i am a 19 year old college student who was diagnosed with Celiac last year about this time. the applied kinesiologist (kind of like a chiropractor with a lot of eastern/natural medicine mixed in) my family goes to is the one that figured it out. he had figured out i had a wheat issue a while before but i didnt think much of it and kept eating it.

for years i had a horrible immune system when it came to colds (would have them for months at a time), lived on immodium for probably 8 years, and senior year of high school i started gaining weight (about 20-25 lbs in just over a year). once i stopped with the gluten i dropped the weight in just over 2 months, my immune system got much better to the point that i could kick a cold in a few days like a normal person, over all started to sleep better (still need a good amount of sleep though 8+ hours and whats weird is when i wake up is more important than how much sleep i get some times, not sure if its related or if im just weird). my stomach issues have become much better, not totally gone but part is probably due to accidentally glutening my self when i thought i was cooking gluten-free and probably other sensitivities i have yet to figure out.

i have ended up cooking much more and the only places i eat out at any more are qdoba and 5 guys burgers (they were very good here about keeping my bunless burger separate from their normal preparation area and changing gloves to prevent cross contamination as best as they really could).

for the most part my family has been pretty understanding and being half italian food is a huge way to show the love so they had to do a lot of adjustment. my grandparents didnt understand the severity of it at first and my grandma trying to show her love would try and get me to eat some stuff with gluten in it (like cakes, pies, cookies) but since i explained to them that its really poison to me they go out of their way to find gluten-free foods and try their hardest to read all the labels.

i am trying to get my family to go gluten free. my dad i am convinced 100% has celiac disease but be is a stress eater and travels for work so it makes it hard for him, my mom tries to go gluten light because she has found the less gluten she eats the better she feels and the better her shingles feel (she got that like sep of 07 and is still having issues, better but not gone). my sister i only recently realized probably has it she had and still has some times horrible asthma and "ADD", and my brother just has a bad immune system and gets depressed easily (given he has had a lot of stress in his life but i think gluten may add to the issues) .

i guess i am kind of rambling at this point but any way, glad to be here now and hope to get info and share info

-matt


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



Celiac.com Sponsor (A8-M):



audone Newbie

Hey Matt--

I'm new here too. Going gluten-free is tough. I've been gluten-free for 5 weeks. I'm lucky that my DH is supportive but I'm sure it's hard getting your family and extended family to adjust. I miss Qdoba. Where I live now doesn't have it. So far I've found Outback and a local Mexican place that will work with me. Have been cooking a lot! I'm glad you joined. People here seem to be very nice and helpful. I'm looking forward to tapping into some of their knowledge as I continue in my gluten-free journey!

Wendy

ginnybean32 Newbie

Im new here too so I dont have much advice except to say its good to see you taking it so seriously so young. Im 35 and dont want to take it serious plus my family is not supportive hardly at all. Good luck!

mattathayde Apprentice

thanks for the welcomes

Im new here too so I dont have much advice except to say its good to see you taking it so seriously so young. Im 35 and dont want to take it serious plus my family is not supportive hardly at all. Good luck!

well as to taking it seriously its not too hard, i would have to take soooo much immodium everyday to be able to function its not a hard choice. plus seeing the other chronic health issues family members and friends have i just see it as something that i need to deal with. it also helped a bit when my parents kept telling me how worried they were with how much immodium i had to take (and my mom being a nurse gave it even more push). if i didnt have the digestive issues i would cheat all the time i know it. i have a friend who has celiac disease but she cheats all the time because it doestn bother her in a way she sees, i really wish she would take it more seriously because she is a very nice and pretty girl and know what its doing to her.

as to the supportiveness i found once you explain "gluten=poison" for your body they are much more helpful

-matt

ranger Enthusiast

Hi. I'm fairly new to all this, too, but cannot tell you how much this sight has helped me. It would be tougher to be a college student with this problem - I cook all the time. If all I had were a dorm room, I'd be lost but I guess that I would figure something out. It helps to have a supportive family. Hang in there. It's worth it!

mattathayde Apprentice
Hi. I'm fairly new to all this, too, but cannot tell you how much this sight has helped me. It would be tougher to be a college student with this problem - I cook all the time. If all I had were a dorm room, I'd be lost but I guess that I would figure something out. It helps to have a supportive family. Hang in there. It's worth it!

ya the last few months of freshman year sucked, i ate chicken wings (unbreaded) and stuff that was more so gluten light, like stuff that just has some soy sauce on it. i didnt go hard core gluten-free until over the summer, but even with gluten light i improved a lot, lost the extra weight, stomach issues were not as bad, better immune system, over all better mental state

-matt

DakotaRN Newbie

Welcome! I too am quite new at this but this site is awesome. I check it out every day because there iso much to learn and the support is great.


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



Celiac.com Sponsor (A8-M):



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. - Mari replied to Jmartes71's topic in Related Issues & Disorders
      15

      My only proof

    2. - Rejoicephd commented on Jefferson Adams's article in Gluten-Free Cooking
      1

      Your Complete Gluten-Free Thanksgiving Plan: Recipes, Tips & Holiday Favorites

    3. - marion wheaton replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?

    4. - trents replied to marion wheaton's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Are Lindt chocolate balls gluten free?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,420
    • Most Online (within 30 mins)
      7,748

    maggie23
    Newest Member
    maggie23
    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

    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • 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!
×
×
  • 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.