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Gluten Free: Day 1


mrsmuffin

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mrsmuffin Newbie

Hello all! I was diagnosed with Celiac and have started my new way of living. I am pretty much asymptomatic, and was diagnosed through biopsy because I went to have a colonoscopy and upper endoscopy due to severe anemia. I really believed that my anemia was due to heavy periods, but they wanted to rule out colon problems since my grandfather died from colon cancer. Thank goodness my GI doctor wanted to do the upper endoscopy also. He told me yesterday that he really was not expecting me to have Celiac, but that was indeed the case.

I am also planning on having my 11 year old tested as he has had digestive issues for the past few years, and I am wondering if this could be the answer to a lot of questions.

Anyway, I just wanted to introduce myself. I have already learned a lot by reading some posts, and can see that this is a very supportive community!

-Holly


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mamaw Community Regular

Hello & Welcome to Our group...

I can say without a single doubt this gluten free lifestyle change is way better than colon cancer...Glad you found the correct path to follow. Being gluten-free is not always easy or convienent but it is all worth the learning curve to be healthy. If you have questions please ask...

squirmingitch Veteran

Welcome Holly! There are great people on this board. Everyone is sooooo helpful. And BOY!, are you ever fortunate to have a doctor "in the know" or at least not obtuse to the fact that celiac disease exists. Get your son tested & don't let him go gluten free until all the testing is done with otherwise it will skew the test results.

pianoland Rookie

You're so fortunate to have found out despite not having any symptoms. Although, I wouldn't be surprised if you start to see improvements in your health/energy in the next few months. I didn't realize how tired I was before I went gluten free.

I know it's overwhelming at first but it becomes second nature.

Raven815 Rookie

Welcome Holly,

I am also new here and I am so thankful I found this board. They are some of the most warm and caring people I have ever come across. I believe I have DH and I was so prepared when I went to an uneducated derm just from reading about it here. I thought I knew a lot about celiac (Mom has had it for about 30 years), but I now realize that I am just scratching the surface.

Laura :P

Mateto Enthusiast

Hello! You'll learn a lot, even some things you didn't want to know....but then later on you realise how happy you are you've learnt it!

GFinDC Veteran

Welcome to the site Holly (MrsMuffin),

There are some other people on the forum who don't have symptoms also. Most likley your doctor found it before symptoms developed. But there is a chance you will notice things improving as you go that you didn't realize were symptoms also. It might be a good idea to write down what you eat each day and how you feel, including mood and energy. Celiac has around 300 symptoms and they are not all digestion centric.

Here's some light reading for starters. Feel free to ask questions too. We all learned from scratch also. :)

FAQ Celiac com

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

What's For Breakfast Today?

What Did You Have For Lunch Today?

What Are You Cooking Tonight?


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IrishHeart Veteran

Hello and welcome!

May I also point you to this thread--more "light reading for you" :lol: (and so I do not bore everyone to death by writing it all it again )

Maybe something on here will help.

Best wishes to you!

IH

mrsmuffin Newbie

Thank you all for the warm welcome! I am so happy to get any information that I can. I know that I will see improvement in ways that I didn't even realized needed improvement!

I just heard back from my son's pediatrician this morning and he was indeed biopsied last year when he had an upper endoscopy. I am glad that he does not have Celiac at this time, but I was also looking forward to a possible explanation for the issues that he has had. We will keep goign on his current plan and I will have him tested again in a few years.

Thanks again for all of the support!

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    • 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.
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